New diagnosis confused

General
1

I was diagnosed by my Rhem. In feb of this year after trying to find cause of exhaustion, swelling feet and toes, brain fog, and pain in my knees. I had ben in what I thought was perfect health until I tore my miniscs in right knee the year before resulting in knee surgery. After surgery, I started experiencing swelling in both knees, and feet. My specialist just kept saying it takes time to heel and I was at least able to walk now. I kept telling him my feet were swelling to the point it was difficult to wear the shoes I had always worn in fact they used to be on the narrow side. I was concerned about perhaps some infection came about after the surgery but he allayed my concerns each time. He stated I had osteoarthritis on my knees and this was not unusual for someone my age (48 at the time) to have this. Long story short I was finally diagnosed after over a year after my regular md ran extensive tests to rule out Lyme among other things. Everything was normal but I was in misery and said I felt like I had mono again as I had this about 10 years ago. He finally sent me to a Rhem. who diagnosed me on my lunch hour after listening t my symptoms and finding some lathes of psoriasis behind my ears. He gave me a number of options for medication and all sounded deadly. I asked him what he hold do if he were me and he told me about Humaira. I started this within a week and notied all my small patches of psoriasis which I thought were excezma for years, cleard up and I felt a lot better. It is going on 5 months now and I feel a lot better but have so many questions that I ideal you all can shed some liight:

  1. I am not experiencing the llevel of pain so many seem to have-oh I hurt but mostly it is in feet and toes that are always miserable. In the summer I am miserable as a closed toe shoe makes my feet feel like they are swollen to the point of wanting to burst. my toes are so fat yet if you saw them you would think they look pretty normal. Is this normal as i have never heard of anyone with this as their primary source of pain?

  2. I do not experience pain in back, neck arms or hands -just achy legs and feet. It appears most people with this illness have issues all over their body.

  3. I am able to work a very hard taxing mentally demanding job with goals that must be met each week. Noone in my office can tell I have this as I am able to remain upbeat and energetic despite the pain and tiredness. I am type A and a workaholic and one of the top employees in my company in my position.I only say this to question if i truly have Psa as it seems in all I have read that so many folks are not able to function with this disease. I have so many symptoms that it points to Psa however but wanted to see if any other disease may be similar.

  4. Everyone seems to have more than one issue and to be on so many medications. I would say I am at a 6 on the pain scale as an average. I have some days better than others but wanted to know if I should look into additional or different medications I feel everyone else is so much more informed than I am.

Thanks in advance for any suggestions or advice, my rhemy is good but he is so general with his answers that I really do not get an understanding of what this awfully thing is all about and what is to be expected unless I read the stories you all share.

Thank you for allowing me to be a part of this much needed support group!

2

http://www.arthritis-health.com/types/psoriatic/psoriatic-arthritis-symptoms

Hello jmt,

So sorry you are going through this. Though I have seen little reference to exhaustion in medical definition, I hear it constantly talked about here, and experience it as well, as much as the more medically mentioned fatigue. Swelling of the feet and hands are common as well, as the knees. More than one of our members have had total knee replacements.

Even though my feet are not my worst area, there is not one single pair of shoes that I can wear that I wore before this hit me, and any type of heel is totally out of the question! New types and sizes of shoes were necessary for me.

http://www.psoriasis-ltd.com/distal-interphalangeal-predominant-psoriatic-arthritis.php this is a description of the type of arthritis that primarily targets toes, but it may not be your particular diagnosis.

Though most of us have a particular area of pain and stiffness, this is a systemic disease, and some are actually affected in every joint.

My Dr told me that many of us do not realize just how effective the treatments are until they are stopped. Many of us have been on at least one or two meds (chemical) that did not help, each at least 3 months and felt the disease progress instead of be lessened, but once you find a biologic that works, you can 'feel' it work! Sometimes before the usual 3 months wait. I must also say that some have been helped by the chemical meds Sulfasalazine or especially Methotrexate, but most of us consider them a necessary step to get to the biologics. Please understand that I am not a medical professional, and cannot speak for everyone, but am trying to relay what I remember from the experiences I have read about here.

You are most fortunate that you are able to still work, and that your illness is undetected by others, believe me that there are many very driven people, dedicated to their families and careers that have been affected by this disease, and some that have regained some function and well being from finding the right med, and surely some still looking for it. I hope that you remain one of the lucky ones who can continue to work, and am so glad that you are being helped by the Humira, I have not had infusions, but understand many have been greatly helped by them.

I was difficult to diagnose because I have never had Psoriasis, though there are some who have Psoriasis and joint pain that have yet to be diagnosed.

We are all so similar yet so different, in our complaints, diagnosis, and progression. Of course you can research this and if you go to 20 medical sources find 20 similar yet different explanations. There is also an unpredictability attached to this, no matter how much we research and discuss, we do not always comprehend why we get a flare when we do. Surely at one time or another we have wondered if we have a correct diagnosis too, and really there are so many types of Arthritis, only a specialist, like a Rheumatologist, can make that call.

By reading other's stories, or doing more of your own research, you will come to have a better understanding of this, as much as most of us non-medical people can. Please feel welcome to read our profiles and go through the discussions, and by all means keep posting.

I am the first, surely others will respond and give you their stories, and input. So nice to have you join the group, wishing you continued success, Jmt!

Be well, be happy,

SK

3


SK said:

http://www.arthritis-health.com/types/psoriatic/psoriatic-arthritis...

Hello jmt,

So sorry you are going through this. Though I have seen little reference to exhaustion in medical definition, I hear it constantly talked about here, and experience it as well, as much as the more medically mentioned fatigue. Swelling of the feet and hands are common as well, as the knees. More than one of our members have had total knee replacements.

Even though my feet are not my worst area, there is not one single pair of shoes that I can wear that I wore before this hit me, and any type of heel is totally out of the question! New types and sizes of shoes were necessary for me.

http://www.psoriasis-ltd.com/distal-interphalangeal-predominant-pso... this is a description of the type of arthritis that primarily targets toes, but it may not be your particular diagnosis.

Though most of us have a particular area of pain and stiffness, this is a systemic disease, and some are actually affected in every joint.

My Dr told me that many of us do not realize just how effective the treatments are until they are stopped. Many of us have been on at least one or two meds (chemical) that did not help, each at least 3 months and felt the disease progress instead of be lessened, but once you find a biologic that works, you can 'feel' it work! Sometimes before the usual 3 months wait. I must also say that some have been helped by the chemical meds Sulfasalazine or especially Methotrexate, but most of us consider them a necessary step to get to the biologics. Please understand that I am not a medical professional, and cannot speak for everyone, but am trying to relay what I remember from the experiences I have read about here.

You are most fortunate that you are able to still work, and that your illness is undetected by others, believe me that there are many very driven people, dedicated to their families and careers that have been affected by this disease, and some that have regained some function and well being from finding the right med, and surely some still looking for it. I hope that you remain one of the lucky ones who can continue to work, and am so glad that you are being helped by the Humira, I have not had infusions, but understand many have been greatly helped by them.

I was difficult to diagnose because I have never had Psoriasis, though there are some who have Psoriasis and joint pain that have yet to be diagnosed.

We are all so similar yet so different, in our complaints, diagnosis, and progression. Of course you can research this and if you go to 20 medical sources find 20 similar yet different explanations. There is also an unpredictability attached to this, no matter how much we research and discuss, we do not always comprehend why we get a flare when we do. Surely at one time or another we have wondered if we have a correct diagnosis too, and really there are so many types of Arthritis, only a specialist, like a Rheumatologist, can make that call.

By reading other's stories, or doing more of your own research, you will come to have a better understanding of this, as much as most of us non-medical people can. Please feel welcome to read our profiles and go through the discussions, and by all means keep posting.

I am the first, surely others will respond and give you their stories, and input. So nice to have you join the group, wishing you continued success, Jmt!

Be well, be happy,

SK

4

I had psoriasis a good 10 years prior the the arthritis developing. My diagnosis stemmed from one swollen and sore big toe. No other symptoms. I thought i broke the toe somehow but the ortho dr referred me to a Rheum dr who confirmed PsA. I.was put on Enbrel and life was grand for almost 5 years. I had no pain swelling or any other symptoms. In 2010 i began waking up with stiffness in my hands and over the next few months other problems crept up. A swollen knee, foot pain, Achilles pain, ankle pain, etc. I switched to Humira b:ecause the dr said the enbrel stopped working. The humira didnt work. Methotrexate was addes but still mo relief. I switched to simponi which helped for a few months but i was still having hand and foot pain. And that’s where my pain always is the worst. I am waiting for insurance approval for Remicade now and meeping my fingers crossed that i will get some relief. Like you i go to work everyday, im a type A personality, but some days are really rough but i just do.what i have to. Its a crazy disease. You can read that many people only have a few joints that are affected and some are completely disabled by it. I think that’s why its so hard to treat sometimes . Sounds like you are in the right place. There are a lot of very knowledgeable people on here that can be a great support to you.

Suzanne

5

Hello! I agree the disease can be VERY confusing and all the little things you have to remember - about "what helped this body part when I had a flare there before" and "oh yeah, I think I've felt this before, it's a PsA flare again". It's down right frustrating! I have PsA all over my body in different areas but when I was first sick, I was in agony - especially with my feet and shoulder and spine - my feet were terrible and had swollen in size about 1.5 - 2 sizes. They are now much better (and are now decreased to a half size smaller size than before all of this started - I don't get that one!), but I am always afraid of them getting worse again. What seemed to help me finally was Celebrex for a short period of time and perhaps more than that a Castor Oil pack on affected areas. I have also tried Humira and Enbrel but had had unwanted side effects and had to stop. I have a flare in my back and SI joints again now.

Similar to you I also have managed to keep working all through this, and have a demanding job - not physically but mentally and I do have to get up and walk people to my office several times a day (that is likely a good thing). I managed to work even when walking was difficult and though I didn't know what I had for almost 2 years and so no proper treatment; however, physiotherapy - on my feet as well - helped keep me going!! My physiotherapist also used some acupuncture for inflammation and ultrasound therapy on my feet. I know a lot of people think ultra sound is a lot of hooey but it really helped me. Some diet changes such as not eating wheat and milk anymore have also helped me.

Unfortunately your Rhuematologist is probably correct, if you have it in your feet only, than that's good and I am glad that Humira is helping you. I figure I am still able to work because of the job I have and because I just don't have it quite as badly as some others do. That makes me think that I can't imagine how other people cope when it is worse. I am just glad I can still work.


I hope you find helpful information on the site and that you are feeling even better soon!

6

Hi there, and welcome. I am quite new around here, and take comfort reading these entries. I have no one in my life who has PsA, so this community is helpful.

I was diagnosed this March by a rheum although my primary dr told me I had it the year prior. Since my symptoms back then were more mild and completely disappeared, I doubted I had any such thing! But this winter I KNEW something was very wrong since I was in terrible pain ALL OVER and was stricken with the worst FATIGUE I ever knew in my life (I am 43, mom of 3 kids, 13, 10 and 3). I felt as if I had the flu with 104 fever...you know when your entire body aches and aches even just lying down not doing anything? That is how I felt, just without the fever. I also felt as if I were 90 years old. My rheum said that I was a classic presentation of PsA, esp since I had Psoriasis (mild case, only on my elbows, knees and on the pinky of my left hand).

She suggested starting with Methotrexate. She described the drug as a known entity, around for 50 years, and a chemo drug given to cancer patients at much larger dosages. I flipped. She also said that it prob would not kick in for at least 6 weeks.

After talking to others and doing some research, I decided to try the natural path, the anti-inflammatory diet. I read Dr. Joel Fuhrman's book Eat to Live, too. My rheum was not optimistic, but said that there was no rush to go on the drugs since my cartilege was in good shape (saw via xrays).

So I eliminated: dairy, wheat, sugar, flour, sugar, alcohol, soy, animal protein, caffeine, artificial sweeteners, I think that is it. I also tried acupuncture and Chinese Herbs for the first time. I had to be open minded, I felt, to all sorts of healing. I started to feel better gradually. It has been about 3 months and the difference was drastic. I could not believe it. I had no pain in my bones and I had energy.

There was big part of me that was skeptical tho'. Was it the food I was eating? Was it the acupuncture? the Chinese Herbs? Or was I just in remission???? I got cocky recently and started to play with my food. I had some soy, two nite in a row. Guess what? the following days, I felt pain in my arms again! So I stopped the soy.

This week I had chocolate cake and ice cream (I guess I was still testing!!! I could not believe that what I ate directly affected my body so significantly!!) Well, I have been fatigued, AND my right foot started to hurt again that same, awful burning that I felt in the beginning of my flare up this winter.

So, now I am convinced. I do not need to test anymore! I am done. I do not want to feel horrible pain and fatigue that this disease brings anymore!!! I am back on my super-clean way of eating, and will resume acupuncture and get more herbs. That is my cocktail, for today.

Will I have another horrendous flare up? Will I need to go on prescription meds? Don't know. All I have is today, and for today this is working for me. Oh I forgot, I in my cocktail is exercise too. I try to get to the gym 2-3 times a week.

I hope this was helpful to someone. It was helpful to me to write it down.

7

Hi Holly5! So good to hear your story and what has been helpful to you. I too have changed my diet (quite drastically) b/c of my diagnosis. It is crazy how my body is so sensitive to what I eat. I had NO idea what I was eating/drinking on a regular basis effected my body so much until this fiasco! I had my doubts about acupuncture too. Now I am a believer that these tiny little needles really work for me!

Thanks for sharing, Really!

andie

Holly5 said:

Hello! I agree the disease can be VERY confusing and all the little things you have to remember - about "what helped this body part when I had a flare there before" and "oh yeah, I think I've felt this before, it's a PsA flare again". It's down right frustrating! I have PsA all over my body in different areas but when I was first sick, I was in agony - especially with my feet and shoulder and spine - my feet were terrible and had swollen in size about 1.5 - 2 sizes. They are now much better (and are now decreased to a half size smaller size than before all of this started - I don't get that one!), but I am always afraid of them getting worse again. What seemed to help me finally was Celebrex for a short period of time and perhaps more than that a Castor Oil pack on affected areas. I have also tried Humira and Enbrel but had had unwanted side effects and had to stop. I have a flare in my back and SI joints again now.

Similar to you I also have managed to keep working all through this, and have a demanding job - not physically but mentally and I do have to get up and walk people to my office several times a day (that is likely a good thing). I managed to work even when walking was difficult and though I didn't know what I had for almost 2 years and so no proper treatment; however, physiotherapy - on my feet as well - helped keep me going!! My physiotherapist also used some acupuncture for inflammation and ultrasound therapy on my feet. I know a lot of people think ultra sound is a lot of hooey but it really helped me. Some diet changes such as not eating wheat and milk anymore have also helped me.

Unfortunately your Rhuematologist is probably correct, if you have it in your feet only, than that's good and I am glad that Humira is helping you. I figure I am still able to work because of the job I have and because I just don't have it quite as badly as some others do. That makes me think that I can't imagine how other people cope when it is worse. I am just glad I can still work.


I hope you find helpful information on the site and that you are feeling even better soon!

8

Ilysoph, I have to ask, and please believe me when I say this that it's not to judge at all. We all have our own forms of treatment and should respect each of our own thoughts on that treatment. But I am just curious because I am always open to other forms of treatment that don't involve medication. The process that you are using... What are your thoughts or your rheumys thoughts on whether it is effective as a preventative measure as well when it comes to future potential damage? I guess what I am asking is whether it's more for the now and treatment of the pain and swelling for the here and now, or is it for all that as well as preventative potential future damage? I hope what I am asking makes sense? If not please let me know. And again I want to ensure that I ask that from complete respect.

9

Hi, JMT

Welcome to the group. I'm glad you're here, but sorry you've had to join us. Your story is interesting, but then again this disease is interesting, as it presents in so many different ways. As it happens your presentation is very similar to mine.

My concerns started with leg aches and pains 15-20 years ago. A rheumatologist told me it was depression. (Yes, all in my head.) Then my knees wore out, and they were replaced five years ago, at the age of 55. Two/three years ago the foot pain started. X-rays showed very little to be concerned about, so docs recommended orthotics. That didn't really help. Finally, the pain got really bad and that is when x-rays revealed erosions in my mid-feet. At that point, I ended up at the rheumatologist's. She suspected psoriatic arthritis, based on some very minor nail abnormalities that I hadn't even noticed. Only after that, did I go to the dermatologist, and she confirmed that I (the lady with the great complexion) have psoriasis.

My feet are swollen, although you'd need a "before" pic to see that they are. They hurt all over, and my toes sometimes feel like they are going to split open. (I'm down to wearing crocs, can't stand anything putting pressure on my feet.) The swelling, which is in the soft tissues and in the bone (according to the MRI) is causing neuropathy, with tingling and numbness. I have deformity happening too: my arch is collapsing. The rest of me is pretty much OK, and my hands are good. But my hip is beginning to give me problems, and I'm starting to wonder about my lower back.

I take a lot of tylenol and occasionally I resort to tramadol. My rheumatologist wanted to try the DMARDs first. I've had methotrexate, sulfasalazine and hydroxycholorquine. I've been on MTX continuously for almost a year, and the other two didn't do any good. Now I'm on MTX and leflunomide. I don't think this is helping, judging from how my feet feel which is a 6 some days and an 8 others. Next will be a biologic such as Enbrel or Humira. I am so fed up, I cannot wait for relief.

There you have it: someone else with feet as the epicenter of their disease.

Seenie

10

Hi there Livinday2day. I know what you are asking. And no worries, I am surely not offended by your question! My rheumy did some xrays when I saw her (hands and feet). she said that there was no damage done at that time. She also said that PsA depletes cart. slowly and that I am not in danger if I want to try the natural route first (although she doubted that the natural route would help me with my pain). I told her that I would come back in a year and redo xrays if necessary to check in and make sure I was OK to continue the natural way. And in the meantime, I am eating more greens that ever, and that can only be a good thing! right? How are you doing?

11

Well good for you Ilysoph. Sounds like we all need to hang around and be friends for at least a year so we can get the update :) And it sounds like I need to cut out somethings and eat more greens too :)

As for me, I am doing well. Just living day 2 day just as my name implies :) I appreciate you asking

12

Its pretty cool that there is a group like this. BUT (there is always a but) The thing with support groups especially online is that they do not represent a normal distribution of the "disease" These are folks for whom many treatments don't work, have problems with the treatment, other problems in general........ (the others are busy living life) I'm going to be gentle here and I'm not thinking of anyone specific (more of a spondylitis group actually, but I am beginning to see some of it here) Everything iisa problem and they go from one crisis to another. "OMG my toe is hurting, what do I do???"


We (who have been diagnosed) have an autoimmune disease. Unlike most autoimmune diseases this one is the exact opposite. Generally an autoimmune disease is because the immune system is failing in some way. With us that's not the case. Our problem is the auto-immune is just fine in fact too fine. It finds all kinds of things a threat and goes after them. We have an over active system. We have just no clue what is going to piss this baby off. It could be something we do eat. (An accident, injury, food anything that has an effect on our body) Everything speeds up. Psoriasis as you may know is new skin being produced way too fast...... Thats why it USUALLY appear in parts of the skin most used. Any way the point is it effects our whole body..... We can guess why it effects some differently than others. I'm not suprised Seenie got it in the feet and knees first... She spent forty years on her feet as a teach. (good teachers NEVER sit)

Natural stuff is mostly luck. Changing diet is one thing eating better, different can't hurt. You simpmply be eliminating something that reves up an already overactive immune system but starting to stuff herbs, supplements and other stuff into your body is playing with fire. Its NOT natural. I hesitate to point out that the most DEADLY poisons are not only natural but 100% organic as well. It may help it may not but the only thing known for sure is it has an uncanny ability to suck a lot of money out of your pocket. One certain way to know if its PURE quackery is if in the "claims" anywhere it says stimulates the immune system to fight arthritis naturally.... (or something similar) The LAST thing we need to do is stimulate the immune system.


Massage, heat, acupuncture, UV light on the psoriasis, TENS etc are all fine. They don't treat the disease, they do cover up the symptoms making life somewhat bearable, but then so will a bottle of scotch or shooting up heroin for a while.


In less disease active disease we use NSAIDS which cut down inflamation with out steroids, sometimere thery need to use steroids to cut down the inflamation (but they don't work long term because our body knows they don't belong there and our over active immune system learns to obliterate them. As the disease progresesses they use the DMRDS (MTX etc.) The purpose of these is to modify the disease (realize we don't have an actual disease so they aren't modifying anything) and thus confuse the Immune system into wimpering pile of nothing. It doesn't always work as some immune systems a very strong willed. Thus the biologics which actual preven the immune system from producing its soldiers called TNFs (excuse all the metaphors.)

So JMT, it appears we all use a lot of drugs, but most of us (particularly those of us who have had this for a while and have been working on it DON'T) As you read the posts here, you will figure out something. This disease effects every part of the body, yet everytime someone has a NEW symptom they invairably (those on a lot of pills) they ask is this a drug side effect, then they ask or could it be the disease?? Those who haven't been with this disease a while want a treatment for that symptom NOW and sadly there is a doc some where willing to give it. If a Rheaumy doesn't do it, he's a bad guy...... You are handling this the way it needs to be handled. "I would say I am at a 6 on the pain scale as an average. I have some days better than others but wanted to know if I should look into additional or different medications I feel everyone else is so much more informed than I am." The answer is NO, What medications can do is very limited. What can do they generally do well. For some reason there is a huge difference between Men and Women. Medication and women don't get along. They become addicted to pain meds faster, and have them lose effect much faster and actually have more side effects. If you take an informal survey, you will find by and large women have more problems with drugs a more difficult time controlling symptoms. Every Drug, supplement, herb what ever that is not natural food pisses off the immune system in some way)

Those who limit the drugs learn non drug (remember supplements are drugs) methods of handling the disease Stick only to the three classes of drugs known to effect PsA. Realize its a process and fight do the best. We learning that treatment itself especially symptom covering meds (opiads) can cause a whole new series of disease that makes EVERYthing worse. and ultimatley makes even minor pain unbearable.

I'm sorry to say it, is to do as you have been, learning to deal with the pain, attack the cause and move on.

As far as the natural methods (TENS and Acupuncture) ONLY in the US are they extensively used long term. The real practicioners in Asia who spent YEARS learning the methods know the Immune system will find a way to attack those effects as well. IMHO even they are effective they are an arrow in the quiver to be used in acute situations, not a force field. The more you read the more you discover how true it is The acupuncturists in this country are (like spinal centers and some chiropractors) businesses.......

13

Hi again, JMT.

I forgot to mention that part of my treatment has been exercise. I try to get to the gym 2-3 times each week. I stretch (feels so good!), lift light weights, get on some machines and then either ride the recumbent bike or walk on the treadmill. Whatever I am able to do that day is more than I would have done if I just stayed home, so I try to be positive, and not critical of myself.

Oh, I wanted to add that although I am new to acupuncture, less than 6 months into treatment, I have had a positive experience. I changed so many things at once, my food intake plus I added acupuncture and Chinese Herbs, so I am not sure what exactly is helping me...I believe it is the entire package and will keep doing what I am doing unless I start to suffer again.

The best of luck to everyone. Stay in touch!

14

Hi Jmt, I’m new to this as well (diagnosed this spring, though I don’t have psoriasis so my rheumy won’t write PSA in my med records, but she’s fairly certain that’s what’s going on). Other forum members will have more info on meds, etc. I did want to say that one thing I’ve learned thru this forum and my research is that this disease is different for everyone. Like you, I work a full-time, mentally taxing job. I also have small children. To date, I suffer mild pain in my feet, hands, and hip, along with some swelling. I fall asleep during the day more (tired, but not the exhaustion reported by others). I only take prescription nsaids. I have not had to limit my activities/work due to this disease. I hope that my disease won’t worsen, and I hope the same for you.

15

Hi Holly,

I had remembered someone mentioning using Castor Oil, by the time I picked some up I could not remember if this was used to rub on affected joints, or used for Psoriasis. Can you tell me how you use it please?

Holly5 said:

Hello! I agree the disease can be VERY confusing and all the little things you have to remember - about "what helped this body part when I had a flare there before" and "oh yeah, I think I've felt this before, it's a PsA flare again". It's down right frustrating! I have PsA all over my body in different areas but when I was first sick, I was in agony - especially with my feet and shoulder and spine - my feet were terrible and had swollen in size about 1.5 - 2 sizes. They are now much better (and are now decreased to a half size smaller size than before all of this started - I don't get that one!), but I am always afraid of them getting worse again. What seemed to help me finally was Celebrex for a short period of time and perhaps more than that a Castor Oil pack on affected areas. I have also tried Humira and Enbrel but had had unwanted side effects and had to stop. I have a flare in my back and SI joints again now.

Similar to you I also have managed to keep working all through this, and have a demanding job - not physically but mentally and I do have to get up and walk people to my office several times a day (that is likely a good thing). I managed to work even when walking was difficult and though I didn't know what I had for almost 2 years and so no proper treatment; however, physiotherapy - on my feet as well - helped keep me going!! My physiotherapist also used some acupuncture for inflammation and ultrasound therapy on my feet. I know a lot of people think ultra sound is a lot of hooey but it really helped me. Some diet changes such as not eating wheat and milk anymore have also helped me.

Unfortunately your Rhuematologist is probably correct, if you have it in your feet only, than that's good and I am glad that Humira is helping you. I figure I am still able to work because of the job I have and because I just don't have it quite as badly as some others do. That makes me think that I can't imagine how other people cope when it is worse. I am just glad I can still work.


I hope you find helpful information on the site and that you are feeling even better soon!

16

Hi Ilysoph! This is fabulous news that you have been so successful with your diet, wishing you continued success!

Ilysoph said:

Hi there, and welcome. I am quite new around here, and take comfort reading these entries. I have no one in my life who has PsA, so this community is helpful.

I was diagnosed this March by a rheum although my primary dr told me I had it the year prior. Since my symptoms back then were more mild and completely disappeared, I doubted I had any such thing! But this winter I KNEW something was very wrong since I was in terrible pain ALL OVER and was stricken with the worst FATIGUE I ever knew in my life (I am 43, mom of 3 kids, 13, 10 and 3). I felt as if I had the flu with 104 fever...you know when your entire body aches and aches even just lying down not doing anything? That is how I felt, just without the fever. I also felt as if I were 90 years old. My rheum said that I was a classic presentation of PsA, esp since I had Psoriasis (mild case, only on my elbows, knees and on the pinky of my left hand).

She suggested starting with Methotrexate. She described the drug as a known entity, around for 50 years, and a chemo drug given to cancer patients at much larger dosages. I flipped. She also said that it prob would not kick in for at least 6 weeks.

After talking to others and doing some research, I decided to try the natural path, the anti-inflammatory diet. I read Dr. Joel Fuhrman's book Eat to Live, too. My rheum was not optimistic, but said that there was no rush to go on the drugs since my cartilege was in good shape (saw via xrays).

So I eliminated: dairy, wheat, sugar, flour, sugar, alcohol, soy, animal protein, caffeine, artificial sweeteners, I think that is it. I also tried acupuncture and Chinese Herbs for the first time. I had to be open minded, I felt, to all sorts of healing. I started to feel better gradually. It has been about 3 months and the difference was drastic. I could not believe it. I had no pain in my bones and I had energy.

There was big part of me that was skeptical tho'. Was it the food I was eating? Was it the acupuncture? the Chinese Herbs? Or was I just in remission???? I got cocky recently and started to play with my food. I had some soy, two nite in a row. Guess what? the following days, I felt pain in my arms again! So I stopped the soy.

This week I had chocolate cake and ice cream (I guess I was still testing!!! I could not believe that what I ate directly affected my body so significantly!!) Well, I have been fatigued, AND my right foot started to hurt again that same, awful burning that I felt in the beginning of my flare up this winter.

So, now I am convinced. I do not need to test anymore! I am done. I do not want to feel horrible pain and fatigue that this disease brings anymore!!! I am back on my super-clean way of eating, and will resume acupuncture and get more herbs. That is my cocktail, for today.

Will I have another horrendous flare up? Will I need to go on prescription meds? Don't know. All I have is today, and for today this is working for me. Oh I forgot, I in my cocktail is exercise too. I try to get to the gym 2-3 times a week.

I hope this was helpful to someone. It was helpful to me to write it down.

17

Thanks very much SK!! How are you feeling? What is working for you lately?

18

Hi Andy,

Glad to share with you and here what is helping you. What you and others have said in this discussion has encouraged me to change my diet even more.....which is going to be hard!! But, as I have found with wheat and milk, if it makes me feel better it's well worth it.

Thank you for sharing and asking your question :)

Sue-Anne

Ilysoph said:

Hi Holly5! So good to hear your story and what has been helpful to you. I too have changed my diet (quite drastically) b/c of my diagnosis. It is crazy how my body is so sensitive to what I eat. I had NO idea what I was eating/drinking on a regular basis effected my body so much until this fiasco! I had my doubts about acupuncture too. Now I am a believer that these tiny little needles really work for me!

Thanks for sharing, Really!

andie

Holly5 said:

Hello! I agree the disease can be VERY confusing and all the little things you have to remember - about "what helped this body part when I had a flare there before" and "oh yeah, I think I've felt this before, it's a PsA flare again". It's down right frustrating! I have PsA all over my body in different areas but when I was first sick, I was in agony - especially with my feet and shoulder and spine - my feet were terrible and had swollen in size about 1.5 - 2 sizes. They are now much better (and are now decreased to a half size smaller size than before all of this started - I don't get that one!), but I am always afraid of them getting worse again. What seemed to help me finally was Celebrex for a short period of time and perhaps more than that a Castor Oil pack on affected areas. I have also tried Humira and Enbrel but had had unwanted side effects and had to stop. I have a flare in my back and SI joints again now.

Similar to you I also have managed to keep working all through this, and have a demanding job - not physically but mentally and I do have to get up and walk people to my office several times a day (that is likely a good thing). I managed to work even when walking was difficult and though I didn't know what I had for almost 2 years and so no proper treatment; however, physiotherapy - on my feet as well - helped keep me going!! My physiotherapist also used some acupuncture for inflammation and ultrasound therapy on my feet. I know a lot of people think ultra sound is a lot of hooey but it really helped me. Some diet changes such as not eating wheat and milk anymore have also helped me.

Unfortunately your Rhuematologist is probably correct, if you have it in your feet only, than that's good and I am glad that Humira is helping you. I figure I am still able to work because of the job I have and because I just don't have it quite as badly as some others do. That makes me think that I can't imagine how other people cope when it is worse. I am just glad I can still work.


I hope you find helpful information on the site and that you are feeling even better soon!

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Hi Ilysoph!

I am currently on Enbrel, feeling a considerable difference at 10 weeks, but it was noticable almost immediately! Glad to know that the progression is being slowed, as it comes on FAST when it comes, at least for me! It was 7-8 months on SZ and MX which did not help me, and in the mean time the Arthritis really went after me!

Wishing you continued success!

SK

Ilysoph said:,

Thanks very much SK!! How are you feeling? What is working for you lately?
20

Thank you all for your kindness and support. I am overwhelmed by each one of you who took the time to explain what this disease is all about. I learned more today than I have since diagnosed.

So peculiar that so many have not found Humaira to be helpful as this is all I know. I have not noticed any side effects but I have noticed my face has been quite red for weeks and wondered if this may be something to do with this drug.
Thank you all again, I want to spend some time tonight reading everyone’s stories and learning what I can . Hopefully I can offer some guidance and support in the future!

Hugs to you all
Jmt
Mamma said:

Hi Jmt, I’m new to this as well (diagnosed this spring, though I don’t have psoriasis so my rheumy won’t write PSA in my med records, but she’s fairly certain that’s what’s going on). Other forum members will have more info on meds, etc. I did want to say that one thing I’ve learned thru this forum and my research is that this disease is different for everyone. Like you, I work a full-time, mentally taxing job. I also have small children. To date, I suffer mild pain in my feet, hands, and hip, along with some swelling. I fall asleep during the day more (tired, but not the exhaustion reported by others). I only take prescription nsaids. I have not had to limit my activities/work due to this disease. I hope that my disease won’t worsen, and I hope the same for you.