Hello Group,
I was wondering if anyone suffered with just random flare ups with this disease? I have particularly nasty flare ups with severe joint pain and swelling that lasts upwards of a week or two and then subsides. The flare-ups will happen randomly and in differing joints. This makes it hard to justify aggressive meds. I have needed short term steroid treatments in the past, usually 5-7 days and it clears up skin rash an all. Has anyone else had similar experiences? If so what helped?
Thanks,
Matt
I’m going to answer your question as two.
First, yes, I absolutely do have pretty random achy joints. Every morning, it seems, I can assess something different from the day before. I don’t count these as flares per say, until the pain becomes pretty constant, as does the swelling and warmth of the joints, and I notice a progression. Such as on day one I have a few fingers that are tender in the joints, day two I get a little swelling in the same joints, day three comes with more swelling, pain and heat in the joints, then it progresses from there. It’s also usually in more than on extremity and multiple joints are affected. That is a pretty typical flare for me.
Second, the preferred treatment IS early, aggressive meds with a DMARD, biologic or a combination of the two. External symptoms often don’t match what is going on inside your body and within the joints. You can have very few external symptoms and a raging disease carrying on inside. The opposite is also true. One can also live for a time with a mildly progressing disease process and then one day, your body decides that you did something it didn’t like and begin some serious and rapid damage.
I don’t trust this disease to treat it with intermittent oral steroids, which cause their on set of problems and adverse effects. I am glad to take my aggressive meds happily. Of course, if I didn’t have severe symptoms, it would be had to convince me to take them, but the healthy respect I have developed for this disease would probably have me on the same treatment I’m on now.
Ps A is a complex auto immune disease. Some of us have intense symptoms like stiffness and pain, but very little joint destruction. Others have very few symptoms but fast intense joint destruction. There is no way to predict what type we have until the joint destruction happens and then it is too late.
For 30+ years I had sporadic symptoms. I had multiple joints injected when they locked and at some point realized something more was up and took myself to a Rheumatologist. When I started to feel like a pin cushion I knew the disease needed better treatment and started a biologic. Biologics are the only med proven to prevent joint destruction and have less side effects than mtx or the NSAIDs. I do not take prednisone as the taper causes a huge flare for me and I believe it is too dangerous a drug for me to use. It can shut down the adrenal glands permanently and that is something I do not want to experience. I do think it is more safe in short tapers of 3-5 days but my PsA needs longer and higher doses than that.
I found once I started treating my PsA better I had fewer, less intense flares. I also could plan my life a little better without sudden flares interrupting my plans as often.
What meds are you on right now? Does it seem to be working for you?
I have been off all meds for 10 months. The results from the one biologic were great but the side effects were worse. I lost out on a lot of things because of the side effects. I know they are probably my best bet but it was as if I was too heavily dosed. My doctor didn't want to deviate from the recommended dosage so had no choice but to discontinue. I have been free of almost all symptoms till now. What is the consensus on lower doses of biologics or taking them differently than the manufacturer indicates like every other week instead of every week?
michael in vermont said:
Ps A is a complex auto immune disease. Some of us have intense symptoms like stiffness and pain, but very little joint destruction. Others have very few symptoms but fast intense joint destruction. There is no way to predict what type we have until the joint destruction happens and then it is too late.
For 30+ years I had sporadic symptoms. I had multiple joints injected when they locked and at some point realized something more was up and took myself to a Rheumatologist. When I started to feel like a pin cushion I knew the disease needed better treatment and started a biologic. Biologics are the only med proven to prevent joint destruction and have less side effects than mtx or the NSAIDs. I do not take prednisone as the taper causes a huge flare for me and I believe it is too dangerous a drug for me to use. It can shut down the adrenal glands permanently and that is something I do not want to experience. I do think it is more safe in short tapers of 3-5 days but my PsA needs longer and higher doses than that.
I found once I started treating my PsA better I had fewer, less intense flares. I also could plan my life a little better without sudden flares interrupting my plans as often.
What meds are you on right now? Does it seem to be working for you?
Think we all go through a stage of wondering if we really do need these aggressive meds, but as has been said already…the only treatment which is based on evidence based practice is the use of these meds to try to prevent bone damage and deformity long term.
I myself have just had to give myself a mental slap over the last few days when I was wavering on whether to go on to a biologic…I found it came down to this…do you want to prevent bone damage? Yes… No contest
I don't know anything about lower than recommended doses but there may be information out there that i have not seen yet. I do know it took 4-6 months of taking the biologics to see consistent improvement and a waning of the side effects. I had a bit of a hang over for a day or two after starting a biologic. Have you tried a different biologic to see if you do not have those side effects with a different medication?
My doctor has mentioned enbrel but won't the side effects be the same as say humera which is what I was on. I couldn't even drive a car when I was on humera I was constantly spinning almost a feeling of vertigo. So as you can tell I am gun shy to say the least.
Hi there, MM. I won’t repeat what’s already been said by Grumpy, Michael and Louise. I can certainly see why you are gun shy, but they are right on the money as far as I am concerned. What I will tell you that I’m a case of “How Not to Treat PsA”. (Maybe we should do a reality show like “What Not to Wear”. Now let’s see … who would be our hosts? But I digress.) I have two knees and one hip replaced. The other hip is on its last legs. My feet are deformed and I have trouble walking. Why? Because doctors trivialized my mystery symptoms, and when I finally had a PsA diagnosis, the rheumy treated me conservatively because she said my disease was mild. A second opinion suggested severe disease with a lot of damage, and I am finally being treated aggressively. My life would be very different today if I had had aggressive and early treatment. Hindsight is wonderful, isn’t it? Please consider getting back on the aggressive treatment wagon.
Just because Humira gave you a severe sidee effect, doesn’t mean another biologic will too. There are several out there: some work on TNF-alpha, others work on different proteins. I think it’s well worth the attempt.
All the best
Seeniee
Hi MatthewMac,
No, one biologic will not necessarily have the same side effects as another. Enbrel put me in a remission. Remicade put me in anaphylactic shock. Humira was like injecting acid (painful) that did nothing for me. Your body will respond differently to each medication. Even though the biologics are similar, you definitely need to try another. Your intermittent steroid "treatment" is only going to get you more damage long term.
Hi, Matt!
There are people who react badly to Humira and only Humira and go on to Enbrel or Remicade without issue. Due to the nature of PsA and the irreversible damage it causes, it would definitely be worth talking with your doctor about your options.
I seem to get side effects from EVERYTHING I take. I didn't have ANY side effects from Enbrel, if I recall correctly. I'm on Remicade now, and that's one of the meds that the dosage and timing can be manipulated to suit the patient. I'm on a fairly high dose and do have nausea issues for a couple weeks after infusion, but it's definitely better than allowing this disease to do more damage to my already-damaged body.