I started MTX and a prednisone taper 6 weeks ago. The first 4 weeks on the higher doses of Pred, I felt so great ! Now I am on 7.5 mg of pred everyday and 10 mg of MTX a week and all of a sudden WHAMMO, I feel like I played Wipe Out and lost.
I am bummed. Is this typical ? My rheumy told me that if I wasn't better by the end of November, I we would try Remicaid or another biologic. :P
How are you feeling today ?
MimiB you are NOT whining and OMG if we can't vent here where people care & understand then where! Sorry you're going through a rough patch! Hope you get through it with a mimimum of stress and pain.
I'm also sick of the PSA shuffle- two steps forward, giant leap back yadayadayada. It is SO unfair that you feel ok then WHAMMO
You almost get scared to admit to yourself when you feel good!
Heres hugs!!!
Take care
I don't know how it happened but I had three batches come due today so have been back sweetening all afternoon, and it takes alot of tasting to get it right. All three batches (wine were ver dry. I may be a statistician but in my impaired state.I don't trust the calculations to sweet wine. I say this because I may be misunderstanding "whamo" To me this means " wiped out", "pooped", exhausted etc. This is a part of PsA but it can also be a side effect of coming off predi along with some of the other things you are describing... A move to something different nay be apprpriate BUT if you are reacting to coming off Predi, you have every reason to whine..........
You’re not whining, its so frustrating all the ups and downs of PsA. You just start feeling the old ‘you’ may be making a come back and you either slide back down the hill or just fall off the ladder. Saw a locum GP this morning for pain relief …this will be the first time I’m back on pain relief meds for a long time…I have attempted to work with TENS and Tramadol but I felt like I’d been to a wine tasting at lambs lol 
If you’re offered a move to a bioligic I would take it…here in the UK we have to fail on 2 DMARDs like MTX before biologics are even considered. I’ve been told the period after diagnosis and getting the right drug therapy that suits you can take time and can be the most frustrating so hang in there x
So sorry you are in pain. I am on remicaid & it does make me feel the best I ever had. For me the only problem is the medication wears off so my rheumy is increasing the dosage and frequency.So try not to get discouraged. Sending many HUGS your way. Be sure to keep us updated.
Its a good question to ask him....
I'm on the "advisory board" of a local clinc. Our docs comment constantly on the over use of of "procedures" which is what is driving profits the hospitals and hospital based practices NEED to survive in the face of declining payments from insurance companies (can't believe I said that with a straight face.) remicade in many areas is "required" to be given in the hospital as opposed to an infusion center at a much lower cost. After the first few infusions the risk of allergic reaction is equal that of most of the drugs given in infusion centers. BUT the practice continue$. Many Rheumys have their own infusion centers.
Remicade is a great drug, don't misunderstand, but IMO should be last on the list not first. It seems unreasonable to me to be required to take a day off work to get if nothing else...
There is some question if a 7.5 dose of predi is therapeutic BTW. You might want to ask your doc to play with it.....
Whine away, my dear. I don't whine to my family or friends, because it can get old and be a turn off. This is the perfect place to vent. I'm sorry you're struggling right now. The past few days with the cooler temps have been awful for me. Is this the case for you as well? I too have been on mtx, (7 yrs for me ). Worked great on skin, did nothing for PsA. So you have options in the form of meds, thank God, right? You have a great sense of humor, so that helps a lot. I get angry at times, toward the disease, pain, etc. I think swinging a pillow around, hitting it on the bed, floor, etc. helps me get the negative energy out. haha. My sweet pup helps me relax. I wish I could help you with more than just words. Hang in there, knowing you help us out every time you post. God bless...
I hope you feel better soon! I have been on 3 biologics (remicade, humira and now enbrel). My doc said the reality is that I will always struggle with flares, regardless of the drug I’m on. The same thing happens to me sometimes when I’m tapering off prednisone. Once I get to 10 mg, the pain starts back up. You are not alone and we totally understand your frustration! If you can just rest thru this episode do that but you may have to prolong the predi for awhile if you work. I know it’s a bummer- it gets so boring! Hope you and your doc can work together to get thru this rough patch! God bless.
This is a VERY normal response to coming off of prednisone! Prednisone reduces inflammation and causes a remission of our PsA symptoms. It is euphoric! Unfortunately, coming off of it often makes us feel like we are in a major flare because the inflammation all gets refunded. I use prednisone for asthma and have to go on and off it regularly. It is a blessing and a curse. However, I have found that since I am on Enbrel, the flares are greatly reduced when I come off. It also helps if you wean slowly. I do 5 mg drops 3-7 days at a time.
I am so sorry you are going through this and I know exactly how you feel. It is heartbreaking to have all that pain and fatigue return after feeling so good! Try to hang in there. Take exquisite care of yourself over all else and look for ways to reduce inflammation. Anti-inflammatory foods, ice, meds, etc.
Warm regards,
Julie
How long between flares? I went 10 months since my last one and before that It was about six months. I don't think there is any average time between flares as we are all so different and our circumstances vary so much.
I do hope you improve soon.
I was diagnosed about a year ago and with the help of a great Rheumatologist we have made a lot of progress. The part that I am have not made much progress with is accepting that I have psoriatic arthritis. This weekend I started my first flare up in several months and going to work today was a challenge physically. The biggest challenge is how do I accept my limitations and create a life for me with PsA.
Last month I started going to a new primary care provider to address the fatigue, headaches and other issues. Monday’s visit was ended with hearing there is nothing to indicate anything causing the fatigue and she seemed to pacify my persistent question “what can we do to fix this” by giving me some antibiotics to treat a possible sinus infection. I hope this will fix me.
Thanks so much for the link to the Spoon Theory. It helped.
thanks for sharing. I noticed that almost 200 people have read this already. pretty cool.
Hi,
My doctor uses Remicade not as much as other doctors. Our bodies create a resistance to medications. He says that Enbrel, Humira, etc. can be used again effectively after being stopped for a while. Remicade, on the other hand, once the body is used to it, it's for life; you may never go back to it.
mimiB said:
Thank you , Liz :) My doc says Remcaid is what he would recommend next. I wonder why he prefers it over Enbrel, which might be easier for me to afford. My pocketbook will definitely make the determination. I have insurance, but my co pays and deductibles are high. I noticed that Enbrel has a program to help pay for the put of pocket expenses. I plan to ask my doctor about Enbrel and why he lies the idea of Remicaid better.
eventhough im on 10mg mtx...stil have some pain on my small joints... fingers n toes... hopefully cn b happy without pain... :)