I was wondering if there is any thing that could help psa before having to start on methotrexate or biologics ?
Hello to you as well. I would love to tell you yes, but in my opinion no. Some things work well for other people, homeopathic techniques and supplements, but when it comes right down to it you need to halt this disease in its tracks. These medications will do that. It's a good idea to add an exercise, yoga, and vitamins into your daily routine, but these things do not take the place of the medications that will help you. There are ladies and gents on this site who have more information for you then I have. Listen to them and your doctor. I've been diagnosed for over a year but had this disease for many, many years now. Do not fear the medication, fear the disease.
Hi Jasmin! I agree with amielynn that the supplements and so called natural cures really don't have any effect against PsA symptoms. I tried a lot of them and didn't get better-just kept feeling worse. While that was going on, I waited almost 6 years from diagnosis before I started seriously treating my PsA with a biologic, Enbrel. And Enbrel made a remarkable difference in my symptoms--both PsA and psoriasis. Unfortunately, waiting 6 years was not the smartest approach. I have terrible damage to my spine and my feet. The pain in my left foot is cramping my style, to put it mildly. Thank god my right foot doesn't hurt as bad, because I'd be even more limited if that was the case. My back is damaged and I had acute crippling pain last year from my SI joint and protruding discs.
I've been on Enbrel for 16 months now. It worked for me starting with the first injection. I almost immediately felt more energetic and the stiffness and sore joints disappeared. My psoriasis improved by at least 80%. I can't imagine how much worse I'd feel right now if I hadn't started Enbrel when I did.
I do take fish oil and coq10, and recently started taking tumeric (curcumin), to boost my health--not to cure anything.
Good luck in making the right decision about treatment for your PsA! :-)
Thank you ladies… I’m just so worried about lowering my immune system it scares me… But I don’t want to suffer either. I guess I will figure it out once I see my dr next week
OK, yes, it can lower some people's immune system. It only targets a small part of your immune system. I'm a germaphobe. I work at a university and have 7 young grandkids I'm with a lot. Last winter I caught two colds that each lasted 5 weeks, which is very unusual for me. I didn't get real sick, though--no fever or body aches. It did worry me at the time, so during those colds I delayed my injection a couple times. This summer I caught strep A. No complications--My rheumy told me to stay off Enbrel for a few weeks. I got over it with an antibiotic for 14 days.
My white blood cell count was slightly below the normal range before I caught strep, and it went up into the normal range afterwards. My rheumy is keeping a close eye on my WBCs and told me I'll have to go off Enbrel if they go too low. I'm hoping they stay normal because Enbrel has made me feel so good.
As far as I know, this isn't a common issue with others taking Enbrel.
You'll figure it out! Good luck!
Hi Jasmin, I think that's a worry we all have in the beginning because for most of us it's the first time we've come face to face with medications anything like this. But a couple of things to remember, methotrexate is taken in a much lower dose than when it is used for chemo so it doesn't wipe out your immune system. Most people here who take it don't have any more than normal infections and the docs monitor your blood work so closely that any signs of a weakening immune system are picked up really fast. And the biologics, well they target such a specific part of the body's immune response and it's not the bit that keeps infection at bay ... again your bloods are monitored closely so anything like the WBC reduction that GrandmaJ mentions is spotted and acted on immediately.
I've been taking DMARDS or biologics constantly for about 3.5 years now and haven't had any problems at all, just a couple of colds. I was pretty robust and healthy before this anyway. I am just sensibly careful to wash my hands and avoid people with streaming colds ... but I used to do that anyway. It's helped me to look at the bigger picture of the damage this disease can cause if left untreated ... and it's for a lifetime, not just a few days or a week or so if I pick up a bug.
Hi, Jasmin, and a warm welcome to you. I’m the oldtimer here, and I remember when all the ladies who just responded to you were newbies. Heck, I remember when I was a newbie here too. We all wondered the same as you did! Here is something I think is worth reading, if you haven’t already found it:
http://discussion.livingwithpsoriaticarthritis.org/forum/topics/symptom-co…
Grandma J and I have two PsA things in common: one, we were both a long way down the PsA road before we started aggressive therapy. (Our reasons for delaying were different, but the result was the same.) Two, we both have joint damage, something, as far as I know, the other ladies don’t.
It really is hard to swallow that you have something that needs aggressive treatment. We know. We’ve all been there. How aggressive is aggressive? Well that depends on the severity of your disease, and your rheumatologist’s prognosis. The advice I usually give people is to accept the most aggressive treatment that your rheumatologist is prepared to give you. Other than that, I totally agree with what my friends here have said. From Amielynn: do not fear the medication, fear the disease. Take it from GrandaJ and me, you don’t want joint damage.
Seenie. Thank you for your response…listening to all of you gives me the courage to to what I need to do… I’ve been ill for 1 year and suffering all though I do not have the joint damage yet but I sure do hurt like hell … Inside it just stressing me out … It’s like I’m forcing myself to do everyday task… Well I will keep everyone updated on my treatment plan… I also read that there are different types of psa some more milder than others do you think that’s true?
Yes, there are a lot of variations on the PsA theme. In my opinion, where you want to get to is with a rheumatologist who says “Here is my assessment, here’s why, and this is what I think it’s best to do”. At that point, you need to feel like it all makes sense to you, and is consistent with what you are thinking and feeling. This may seem obvious, but when my first rheum, who I loved as a person, told me her assessment and what she thought needed to be done, my gut feeling was “Oh really, that’s not how I’m feeling, but I guess I have to trust you because you’re the rheumatologist”. But despite my gut feeling telling me the opposite, I acceepted her recommendation at face value. That’s no good, and I paid dearly for that. If you need to change rheums to get to that point, you do so. And then, you acceptt the most aggressive treatment that they are prepared to give. And maybe they will say, “This is why I think yourj disease is mild and your joints are OK for now, and the most aggressive treatment I would give you is sulfasalazine.” But you want to feel in your gut, given their explanation, that this is the right course for you. And then you go for it. On the other hand, if the rheum says “Here’s why I think you need one of the big guns …” and that makes sense to you intellectually and in your gut, you go with that too.
Does that make sense?
Hi Jasmin!
Like all diseases, PsA affects different people in different ways. My old rheumatologist recently left the country to live in Norway. His parting words were for me to not worry because my PsA was relatively ordinary and my treatment plan was standard. But a couple of months after that conversation I started feeling terrible and my new rheumy changed my treatment plan. Trying to keep a flexible mindset about the disease is not always easy and the goals posts of PsA can shift often. Then again, they might not! Welcome to your new normal (HINT: nothing is normal!).
Listen to your body, listen to your rheumatologist (get one you really trust and can work with and who listens to you). And if there are things that worry you about your symptoms, your treatment: ASK!
There are some people who do notice that it takes longer to get over colds, flu, etc., and a handful may get some nasty infections, but these are very much a minority. I've been on biologics for 3 or 4 years now and have not had any remarkable illnesses in that time. I dont really notice that I get sick more often either. I make sure I get my flu shot every year, and that my family does as well. When there are sick folks around, I wash my hands frequently, but otherwise I don't take any extraordinary precaustions. I also worked as a nurse with bedside paitent conact for the first two years. We do have many bedside nurses on this site who come in contact with all sorts of dangerous cooties, but do not have problems with infections.
You gotta look at it like this: this disease WILL destroy your body if you let it. With treatment that progression can be stopped or slowed and you'll have many more years to live your life with joy and freedom, and a small chance of getting sick. It is worth the odds is what I am so unelloquently trying to say. ;-)
Jasmin said:
Thank you ladies.. I'm just so worried about lowering my immune system it scares me... But I don't want to suffer either. I guess I will figure it out once I see my dr next week
Just my two cents re. infections, I've been on Humira for 16 months and DMARDs for 2 years prior to that. I've not had one cold or 'flu or stomach upset or any infections other than ear infections caused by psoriasis. I'm a lousy housekeeper who wallows in germs and have never used a hand spray or whatever in my life. And I do mix with 'the public' not in a health care setting but some are none too well.
(Beginning to get scared now, after all that bragging I'll probably start running a temperature and sneezing)
Jasmine,
I have only had diagnosis for a year but because of damage already done by me denying the issue or justifying the relentless joint back and hip pain self medicated with Advil, yoga etc. now I wished I’d done more sooner as the damage caused by active disease will be with me forever. Judging by the aggressive nature of the disease early treatment to try to halt or slow down its progress is best. I am a nurse. I was off of work for a year trying to cope and get a medication regimen that worked for me. I’m on remicade and methotrexate. I’m back to work in a hospital and though I’m only working 24 hours per week I am grateful that I physically can! Though I’m not as I once was I am functioning. There is certainly room for improvement.
Follow your doctors advice …the treatments are effective to slow down progression. The longer you wait you could get more damage which is not easily repaired or need for joint replacement arises.
Thank you for sharing and I hope you feel better soon and find the best treatment for you…
Jasmin, warning: you may not have strong signs of joint damage yet, but that doesn't mean you don't have joint damage. I think this because my feet hurt mildly to moderately for years (well, and then I would say the neuropathy was sometimes severely) and back then there really wasn't much joint damage showing up on x-rays. All of a sudden, the joint damage pain appeared! Had I known those feet joints were at the brink of something serious I would have pampered my feet!!! Once the cartilage is gone there's no growing it back. My damage looks like it occurred from osteoarthritis, though involvement with psoriatic arthritis is evident.
I'm glad you're seeking advice, because you're getting the information you need to make a smart decision.
Jasmin said:
Seenie. Thank you for your response..listening to all of you gives me the courage to to what I need to do.. I've been ill for 1 year and suffering all though I do not have the joint damage yet but I sure do hurt like hell ... Inside it just stressing me out .. It's like I'm forcing myself to do everyday task.. Well I will keep everyone updated on my treatment plan... I also read that there are different types of psa some more milder than others do you think that's true?
Yes… Oh I know that this is just the beginning its just going to get worse at the moment my left shoulder and clavicle and joints in my chest have been killing me for two weeks…I swear the way I feel makes me want a bone scan and a biopsy of the tissue in my chest and a spinal tap and a pet scan! Lol. I know it sounds crazy I’m just thinking out loud lol. I say this because that’s how lousy I feel… And my rhuematologist keeps telling me that she doesn’t have enough evidence to give me a diagnoses besides fibro! But now I do have it when my hands starts to flare my sides of my palms start to turn super red like a rash under the skin. This is a new symptom! And since I work for an ophthalmologist I see list of pts who have this disease and they say that this is one of the main symptoms! I see a dermatologist on Tuesday ! I also wanted to ask you ladies if with psa does your inflammation show up high on your sed Rate and the c reactive test?
Hi Jasmin, sorry I am not so good with the terminologhy. If you are talking about inflammatory markers in blood tests, then my answer is that my bloods consistently dont show anything really. I consistently have speckled ANA which can be normal and other things that show in my blood, but even when I feel absolutely rotten my inflammatory markers are mostly fine, sometimes on the higher end of normal. This did my head in for a whike until I understood that it's not that unusual.
Yes … The inflammation markers mine are sometimes a little elevated but for the most part completely normal when I’m feeling my worst … It’s frustrating
Jasmin, I think the number is something like 50% of PsA patients don't show any elevated inflammatory markers in their blood. I'm in that group! Just another thought, take photo's any time something is going on with your skin as it often disappears right before a doctors appointment (typical, eh!) and also check out whether any of your family have a history of psoriasis as with all the other pointers this is sometimes all it takes to get diagnosed.
Jas,
It is fair to say there are milder forms, and more severe forms. My Rhuematologist says mine is mild - It probably is. But Seenies said hers was mild. And it was not (read her story - she’s truly remarkable).
Thing is, it’s near on impossible to tell until the damage is done. There’s only one way to stop it - and that’s an effective DMARD for you (biological or not).
You are doing a great job, and we are here if you need a little extra help - always ask! (No question is stupid…)
I'm also a member of the club of people who waited too long before seeing a rheumatologist and beginning treatment, first with MTX, then MTX/Humira and now with Humira only.
As a direct result of waiting too long, I've already had my left shoulder replaced. It's not anywhere close to normal nor will it ever be, even when I have revision surgery--a reverse shoulder replacement--to finally fix my left rotator cuff. Both of my knees are bone on bone. My right hip must be replaced. I have cervical spine issues and am bone on bone between C5-C6 and C6-C7, which contribute to my left shoulder/arm never working "right" again. The doc recommended surgery there--he was willing for me to try an epidural, which thank God, is working. My left hip is damaged but not as badly as my right.
My rheumy has never said whether mine is mild or bad. I haven't asked. What I know is that the horrible fatigue I lived with for at least the two years before I found Dr. Abbas is gone and has been gone since shortly after I began injecting MTX. I get tired because that's what auto-immune disorders do to you.
I've learned to pace myself, i.e., if I'm on the road all day to visit a client, I try to do that on Friday so I can rest and do as little as possible on Saturday. I'm in an arthritis plus class at our local Y. Because of either working out of town or having to work late on Tuesday, and for a couple of weeks because of a pulled muscle in my right thigh, I haven't been for several weeks. I haven't felt as well these last several weeks. Even there, I pace myself. I let the pain in my right hip build to a certain level but then, I take a break. I can't do a couple of the exercises because of my hip, so I do other things. I don't raise my left arm above my head either--I can't, even when I'm on dry ground. My point is exercise is critical.
As far as my SED rate and CrP, yes, I do show those markers. I forget what my levels were the first time I saw Dr. Abbas, but they were awful. As I've been in treatment, they've come down. My SED rate is usually always on the high end of normal, even when I feel great. The last time I had blood drawn, my SED rate was 10 points over the highest. I knew I wasn't feel as well as I normally do--the SED rate showed it. My CrP usually doesn't show changes the way my SED rate does.
I agree--get into treatment, whatever form that takes.