Newbie - Scared

So I am 41 years old, had double TKR last year because of PsA. Primary scared me and told me that if I didn't go see a RA doctor that I would be completely crippled by the time I am 50. The PsA had affected my knees so bad that I had no cartlidge in either knee and bone fragments were chipping off, hence both knees replaced at 40. With the knees cured, now it is time to focus on the pain in my hands, fingers, elbows and shoulders. I am having such a hard time dealing with this. I manage a Foreclosure department at a bank with 19 people under me. I am an emotional wreak. Had to go off the predisone because it made be very irritable. Was taking 4 tabs of 2.5 metho, and that was not working so RA put me on 7 tabs of 2.5mg metho, and the shot of humira every two weeks. I haven't upped my dose yet of the metho nor did the shot. I am so scared of all of the side effects. I have three children, the youngest 2. I have lived with this disease undiagnosed for a long time. I am having a hard time staying awake at work, my mood is off and on again. I am feeling very frightened by all of this information and feel that they maybe trying to rush me into taking this medication. The RA said that I have severe chronic PsA, and that scared me even more. Should I get a second opinion? Also how do you all work while taking these drugs? They seem to hinder my thought process, stay awake and just generally be the happy person that I used to be. I am feeling sad also. Thoughts anyone?

I could have written much of your post. No knee replacements (yet) but a lot of the same pain points. I'm a single mom of two and am also scared of the side much so that I haven't taken any of the drugs. Been managing with a holistic regimen, but going to see a new rheumatologist on Monday and am ready for the scary speeches. Bee venom injections have helped (but be -- no pun intended -- careful of allergic reactions if you have a sensitivity). I don't have any answers for you. Wish I did. But I just wanted to say, I feel your pain and hope it gets better for you.

Thanks, it is good to know that I am not alone with this crap, I am allergic to bee's so thatis out. But I will keep you posted on how this whole thing works out..........

Ugh. The doctor sure could use some bedside manner lessons! Geez, did he/her think you weren't treating your illness? Why did the doc have to use such scare tactics? The medical community really drives me nuts sometimes. As to your future on the mtx etc., people respond differently to treatments. There are many who function well and have responded to treatment and live active lives. Therefore, do not lose hope. I am a newbie just dx'd this past March. I get down too, but I find solace in following the posts on this group, as you will too. My prayers for your peace of mind and wisdom for you and the docs. As for your work life, you may find that you need to reprioritize your life and work situation, but don't try to reorganize your life all at once. Tomorrow is another day. Sorry if this sounds pollyannish to you. I don't mean it too. I'm writing this with shooting pain in my lower back, so I am not downplaying your fear, pain, or sadness. I'm sure that several members will opine as to how they work outside the home, while others are not able to. Only time will tell for you. With the work you do, you certainly must be a go-getter and intelligent. Use those qualities to be proactive in your care, diet, lifestyle and treatments. You can do it!

Hello T,

Welcome, you have come to the right place to talk about all of this! I know that this is a lot to handle, but Dmara gave you some good advice, Buffy did too if you weren't allergic, as I am, we are all on slightly different paths but they all run paralell to the same road.

This disease is a lot to handle, some can work, some cannot. I think your Doc could have said it a little better, but it sounds like your disease is very progressive, and to be diagnosed with 'severe' at your age is a good bit to bite off all at one time. They are letting you know that there is no time to waste as far as treating this, and sometimes finding the correct med for you is an arduous task, but not always, you also must realize that it takes 12 weeks for each med to come to full effect, so time is a definate factor.

Yes, Predisone can make me irritable too, have you talked to the Doc about possibly cutting the dose down, also it keeps you from sleeping, as does the PsA, best to take it in the AM, lack of sleep and stress when you feel so poorly can really take you into the irritable mode too.

You certainly have a lot going on, have you been able to appeal to your family for a helping hand with some things to lower your stress level and your work load?

DMara is right, this cannot be dealt with in a second, and surely as a competent manager, you are already painfully aware of this. One thing at a time, and I would say that YOU need to be the very first thing.

There is a gal here who takes Mx and Humira and it is very effective for her, let me see if I can hail her to talk for a while.

I wish you all the best, be back to you,



I'm a mom of five, was told at 18 years old that I'd need double TKR by age 25. I'm 37 and still putting it off. I have severe, aggressive PsA / spondylitis. I can't take mtx, Enbrel did wonders for my legs and arms (PsA in every joint), but didn't touch my arthritis/spondylitis in my si joints or back and I developed PsA in my chest (ribcage). I'm off Enbrel and getting my second Remicade infusion on Friday.

From what I've heard, the side effects from Humira are minimal, especially w/ the mtx, and the combo can do wonders for people. It's difficult to have to go on all this medication to get things under control, but for many of us, things really are that bad. When I was first diagnosed, I brought my test results, x-rays, etc. to a naturopath friend and she said I needed to take the big guns drugs if at all possible because my PsA / spondylitis was doing so much damage so quickly.

Hi there OK I am going to lay it on the line here and may sound very mean but here it is. This is a scary disease you need to treat it aggressively. So you have chronic agressive PsA so do I . If left untreated it will progress and get worse. Simple math. Fatigue is part and parcel of this disease. You are tired because of inflamation, depression and disease sucking all your energy while your body is fighting with it. You need to get started on your meds. Pronto. They will help you. You have been on MTX for awhile so you should be able to cope with an increase. Start small and add a tablet weekly or half if you think you need to really start slow. Get those shots of humira. Have it done at your Doctors office for the first one. I have never had a reaction to humira ever. I have had a couple of skin infections but I had one prior to humira on MTX so who knows what caused it. Humira can and will supress your immune system so it can and will make you more suseptible to infections. That being said I have never felt as good as I do now and I have not had the flu or a cold in the year I have been on humira. I have had 2 infections but they were back to back and I had just come home from Egypt. So ....

I take 25mg MTX injectable weekly and humira 40 mg every other week. MTX saved me in the beginning. I was on narcotics for pain as I too needed 2 TKR's just like that. It was my first symptom. My knee went then the other went. leg braces for 2. 5 years assorted meds including MTX and I am steel kneed and on MTX and Humira. I cannot work. Period. I putter about in my house. I putter about in my garden. I get my husband to do all the stuff I used to do and have a house keeper in once a month. I manage and manage well.

So well that last year I travelled for 6 months out of 12. I went to see family overseas, I went to Germany with my husband while he worked I went to Egypt. I lived like I do at home I puttered. I went for short walks but I have a life and I owe it to MTX and Humira and my rheumatologist. I am not fooling myself.My rheum says no more 6 week holidays. I really did watch what I did but this disease is aggresive soo now ....

My hips hurt. A lot. I get groin pain alot. I will be getting xrays on my hips soon as I am waiting for my next rheum appt. in Sept. So what are you waiting for. My disease is aggressive and if your rheum says yours is then it is. I started 4 years and 3 months ago on this journey and I am merrily ( sometimes not very) getting along.

I will pm you so we can chat. Please start on your meds They will be a big help.Can you get some time off work or work 1/2 days for awhile? It will sure make a difference if you can rest for a bit.

Hi T,

How are you doing? I knew that as much as the rest of us could talk to you that 2trees was the one. We were just talking earlier about how well she felt taking these meds, and how young she and her sister were when they started along this journey with Psoriasis.

Please do not be afraid or intimidated by all of this, we would like to help you in any way that we can.


ok read your bio. You should go and see the pain specialist. They do often prescribe meds that you may need. I find doctors are so light handed with pain meds but they have reason for it I guess. Hang in there T things will get better they really will.

Hi T, sorry to hear you are dealing with PsA. It is a lot to handle while trying to work and rear children. Yes, the meds are scarey. Everyone here has read my posts about my fears of the meds. But I take them because I don't function without them. The current wisdom is that the best way to prevent progression is aggressive treatment. You will know when you are ready, but if I may, I would like to encourage you not to wait too long.

You will never know how much benefit you might get from increasing your meds until you give it a go. You will be monitored closely for side effects so that they can be brought under control quickly. My own guess is that you will not be able to maintain your current pace unless you do modify your meds. It sounds like you need better control of symptoms.

This is a great site, with lots of folks who have decades of experience with this illness and its treatments. Plus, they are nice, helpful folks. Keep us posted!

Another wise one has spoken! I hope, really hope that we have helped you here, T! You will be in my prayers tonight, I cannot get down on my knees anymore, as I can no longer get up, but I do pray just the same.

Wishing you a good day!'


Hi, T

Welcome! I'm sorry you've joined our club, but I'm glad you're here. When I read your post, I thought "Ha, 2trees needs to respond to this one", and then I saw that she already had! So all I will say is, yes, I endorse everything that she -- and the other posters -- have said.

I, too, have had two knee replacements. When I had them, they thought I had osteo. My PsA diagnosis is recent, and my rheumy has now suggested that I probably have PsA to thank for my titanium knees. The disease is now in my feet, and I am doing the DMARD thing before moving on to a biologic if they don't stop the rot. You mentioned the stress and the emotional turmoil of this condition. Many of us suffer from depression, and that's not surprising, given that all of us have various combinations of pain, discomfort, insomnia, disability, occupational and social limitations, etc inflicted on us by PsA. Please to not delay in seeking some help for the emotional impact of this nasty disease. Stress and depression can make your pain worse, and the pain will make your stress and depression ... yes, it's a vicious circle. Break the cycle before it breaks you.

You asked about getting a second opinion. By all means, that's a good idea. But before you do that, take those meds: as the others have said, you need aggressive treatment to stop the disease process. Getting a second opinion is not going to make your pain magically disappear.

Good luck, and don't forget to let us know how it's going!


Thank you all so much! I have had a week from hell, I tripped on a metal grate at work and had to go to my ortho doctor, and I have tear/sprain in a muscle/tendon (I can't remember what he said) along the inter tracing of my knee. He has said to take it easy for a month and to come back. I laughed when he said take it life does not have a moment to take it easy. But if it is not healed in a month, then MRI and possibly surgery to fix it. Just great, along with everything else. I talked to him about the meds and he supported Humira and said that the medical community has come far. That this will stop the progression of the PsA. I took the 7 metho's today, when my husband comes home I will do the shot. Just to have someone monitor that I don't have side effects. I appreciate everyone's comments and I believe that I will live on this page for support. My job is trying to state that I have not been myself and trying to write me up on a corrective due to my behavior. I have now filed all of the info regarding this illness and the medicines that I have been on and how it can affect your mood. Let's see how far they get with that....LOL. Thanks again for every one of you and your comments, it gives me solace knowing that what I am feeling physically and mentally is not just in my head. :)

Actually its all in your head. It is after all an auto immune disease. Make sure you always use the auto immune word communicating with your employer and NEVER the arthritis word. In fact its always Auto immune PsA. They can always justify action on arthritis but the minute autoimmune gets in the coversation they fear discrimination. Trust me on this, I may of trained thise bastards.(BTW if its Wells Fargo let me know)

If you are fearing the side effects of the treatment more than the disease, thats normal. You will have more side effects (or think you do) Your doc may have been harsh but he was right. Fear the disease not the drugs. You will do fine. The mommy instinct is stronger than any disease.

T, this is correct. Don't use the arthritis word with your employer, or as a general rule with anybody else. As soon as they hear it, they think of their tennis elbow and they minimize your problem. For me it's "auto-immune inflammatory disease that's destroying the joints in my feet". And if they respond at all (like they get the deer-in-the-headlights look) I tell them I'm taking chemo drugs to try to stop the deterioration. (It's true, MTX is a chemo drug, and I may add that I take it in smaller amounts than are used for cancer.) When they hear that, trust me, they take notice. (The sad thing is that if you told them you found a tiny, asymptomatic breast lump, they'd be all over you with sympathy and they'd probably be sending casseroles to your house. Not to minimize breast cancer, not at all, but the vast majority of lumps detected early have an excellent chance of being benign, or having a 100% cure. The best we PsA sufferers can hope for is a remission.)

And yes, as TNT and 2Trees says (and I agree) fear the disease, not the treatment. Of course, easy for us to say -- I worry too, but I try not to fret too much. And sometimes I even succeed!

Employer writing you up? Respond in kind, preferably with a physician's letter that explains the accommodations that you require to do your job. Don't wait until there is a crisis before you rally the troops and get things on paper.

You will get through this. You need to get through this for your family.

Stay strong and keep in touch.


tntlamb said:

Actually its all in your head. It is after all an auto immune disease. Make sure you always use the auto immune word communicating with your employer and NEVER the arthritis word. In fact its always Auto immune PsA. They can always justify action on arthritis but the minute autoimmune gets in the coversation they fear discrimination. Trust me on this, I may of trained thise bastards.(BTW if its Wells Fargo let me know)

If you are fearing the side effects of the treatment more than the disease, thats normal. You will have more side effects (or think you do) Your doc may have been harsh but he was right. Fear the disease not the drugs. You will do fine. The mommy instinct is stronger than any disease.

Come to us when you need us, be good to yourself T.

AHHH good to hear that. I got it now. Auto immune PsA, it is not Wells, but STB.....I am the top manager in the department but tend to tell it like it is, instead of sugar coating. But I have also fixed alot of issues, but in this environment, they like the quiet ones....SMH....But I appreciate that advice. I will make sure my Rhemy puts that on my note Tuesday :) Great advice!!!!! I took the 7 metho's today and the humira shot, I was really tired, but that happened when I started taking 4 metho, so I am hoping that it will wear off soon like it did with the taking of 4. I have a 17, 14, 8 and 2 year old. Geesh right. Well the 2yrold took a nice long nap with Mommy today, so that helped me get through the rest of the day. I am going to ask the dtr on Tuesday if because the knees have been replaced and the PsA can't attack them anymore, if that is why my elbows, wrists, and hands are now jacked up. THoughts? I use my fingers for so much that I do, now if they get the slightest cold, (taking a turkey neck out of a turkey), they lock up and I can't move them for like 15 minutes. The pain is intense. I don't want to lose the function in my arms, and wrist and fingers....That is what I think I am really scared about. But I will worry about the disease instead of the meds. You guys all rock.

You know, I've wondered that myself. My knees were replaced, and the disease then popped up in my feet. I'm still having knee issues, though: I have fluid building up in the knee, which I'm told is happening because the PsA is doing a number on the joint capsule, even though the joint itself is gone. Go figure. Ask the doc, and tell us what s/he thinks!

Good luck with this, T!

TStrick said:

I am going to ask the dtr on Tuesday if because the knees have been replaced and the PsA can't attack them anymore, if that is why my elbows, wrists, and hands are now jacked up. THoughts?

Hello T

You are getting some great advice on the job from everyone, let me help you out with the touch of cold now. No matter if it's the PsA or something like Raynaud's get yourself some gloves. Lined rubber work gloves to handle cold or frozen foods, Byrd said she grabs some of the $1 gloves and has them placed around, keep a pair in your pocketbook or glove box for when you grocery shop. The drug store even has gloves and mittens you can nuke to keep your hands warm.

For sure, get your Dr on board and on your side for work, they know you're hurting and down, don't let 'em kick you, girl!

Come back when you need us!


Went to my Rhemy yesterday, new one, old dr left practice. She is a nurse practioner. She said that I just have to wait for the metho and humira to work. It may take awhile. I asked for a predisone shot and she said No, because she wants to see if the meds work. They did agree to fill out my FMLA paperwork for the job thank goodness. I asked her why I had to go to a pain doctor and she said that she treats the disease not the pain. I think it is just another copay to another doctor. So I called the pain doctor today, they said that the rhemy doctor has to fax over all of my information, they review it and then decide if they will see me...WTH is up with that. So another week to a month before I can get something for the constant pain I am in. I understand they want to weed out the drug addicts but OMG, hello, I am not taking pain meds because I want to, it is because I need it. Hopefully once and if the humira works, I won't need it. That will add another dtr to my cycle. My primary, my rhemy, my ortho and now a pain doctor. Sheesh I am only 41, I shouldn't have to go through all of this just to help me get better or get the disease under control....Major venting here!