Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
Hi Guys,
I don't write much here and even less with this new format but I am so depressed right now I could cry. I was doing so well with my RA. My pain was at an alll time low and my morning stiffness went from bad to virtually non-existant. I still had work to do such as get to a lower dose of prednisone and hopefully off it completely but I was doing great on the Humira, the low dose prednisone, my natural supplements and daily physical activity (gardening).
To make a long story short I went away for a week. It was not my idea and I preferred to wait but the family wanted to take a cruise to the Bahamas from NYC and I kind of had to try and go. There was no flying involved and the waters were smooth but by the 3rd day I began flaring and by day five I was barely walking and I'm now home and I'm doing very poorly with widespread joint pain, muscle pain and even bone pain. I don't recall ever having this much trouble getting around and I had to make myself a cane from an old golf club to use in the morning when my balance is at it's worse. I will admit that stress played a role in triggering this flare so I can't rule out future travel though I will never suggest travelling in the future and I will be more than content to never leave Connecticut again.
So for now I feel totally defeated. I was feeling hopeful with the improvements I had made these past ew month but now I have no idea if I can ever get them back. I had no choice but to bump my prednisone dose which I did not want to have to do but I'm fairly positive I'd be in a wheelchair 24/7 without the prednisone bump. I suppose I should call my rheumatologist and see if he wants me to come in to see him this week. He has mentioned using Arava in conjunction with the Humira so maybe now is a good time for that though we were gonna wait as I was steadily improving even though I was lowering the prednisone. MTX is out for me due to breathing issues.
If anyone has gone through something similar after travelling for a week I'd love your feedback. Actually I'd love anyone's feedback. The big question for me is 'Am I back to the drawing board and do I face another 2 years of battling this disease before I improve again?". Is there anything I can do to get back on track?
Thank you my friends. I am feeling so poorly, so out out of it and so depressed right now but I'm glad I remembered that you RA warriors were here to help.
So someone tell me what to expect when dropping from 30 mg to 20 mg tomorrow. Is my body supposed to be ready for this or something? I will say that I am noticing improvements everywhere but my feet and they always are last to feel better. I have the luxury of going to 25 mg of prednisone for 2 days and then 20 on Monday. Would that work better?
Finally, I may get scolded but I have an extra Humira shot and it would not effect my current prescription to bang another injection at the 7 day mark. The drug has been tested that way and in some cases even prescribed that way. Granted the last injection did not yield any benefits and I know most of your opinions as to why. Maybe, though, my inflammation has reached a point where a shot would help. I doubt anyone would tell me to deviate from my prescription but if you feel strongly one way or another do let me know. I promise not to tell anyone:)
I personally would do the 25 mg for two days if that is an option. I think dropping 10 mg in one day is a lot! And if the second shot of biologic works a bit, then fails, that would be a sign that Humira has failed, I think. In that case, you might need a new biologic along with the Arava.
Also, if you want to come on here and ask for suggestions and encouragement, I would ask that you don't put down the people who offer suggestions. Besides, although this is your thread, someone else might be reading it and be experiencing stress for example, and decide to use some of the suggestions by different people.
None of these threads really belong to us - they belong to the group, and hopefully we can encourage one another even though the post may not be directed towards us.
The Prednisone taper, 10mg decrease seems like a lot, especially if your still gaining control. I'm looking at this as a flare at this point. If dropping by 10mg is to much consider decreasing by 5mg & mention it to your doctor.
The worse part of these treatments is the waiting. I'd add Arava before dropping Humira. Of course that's me, I'd want to rule the Humira out completely before starting over with another med.
Several people recommend Epsom salt in the bath water, worth a try.
You have a point. The meds may help manage the RA yet the symptoms & pain exist it's just more manageable. As far as the brain fog or cognitive issues Ill find these accompany a flare. I can see where decreasing Pred. may contribute but it's always a sure indication I'm heading into battle with my RA.
I'm not sure what you should expect with this decrease. Can only speak from experiance & the first day of tapering may be a lot tougher. Usually when tapering I feel better after first day or 2. I've never dropped 10mg at a time though.
If it's a major struggle go with the 5mg. At least it will get you through the wk end in case you need to place a call to you doctor.
There are those times in life stress is not avoidable. It's trying to cope as best we can. Even with all the help it can take time. We don't always have advance notice in life & for those with stress responsive RA it's difficult.
Much like the weather we can't always control it.
Sammy
Thanks for the input. I dropped the prednisone from 30 to 25 with no ill effects but I'm glad I only did 5 mg for today and I guess tomorrow. I do believe in patience and it appears you do as well. I will try the Arava. I worry about side effects but I at least need to try. That will give me plenty of time to see if Humira is still effective for me. Considering Enbrel did little for me and Humira seemed to help I'm in no hurry switching biologics if it can be avoided.
I have had brain fog from flare but I've had it from MTX and also with prednisone tapers. Sometimes my sleep is disturbed for a long period of time due to the prednisone and that brings a fog as well. It's very hard to precisely put my finger on it but I guess I have an inclination as to why it happens most of the time. One thing I know is I never had any fog or confusion problems before RA came into my life and was sharp as a tack.
My update for today is the joints in my arms and hand are almost back to feeling "normal". My hips and knees are improving and though my feet sill hurt they seam better. It's good that I'm dropping the prednisone today but I'm still glad I only dropped it by 5 mg.
ttyl
I'd make the toilet your first priority. I had one of those metal armrests for the longest time - they're absolutely wonderful if you're not ready to replace your toilet. But when you do, go with the 19" height. That's what I have now and it's so easy for me.
Safety rails for the bath/shower - another godsend. I think mine were about $50 each. I bought two and had them installed horizontally in the shower stall. Cost me $100 to get them installed by a pro. It's one of those "why did I wait so long to get them?" things.
Thank you as well for the handicap tips. The toilet is absolutely what I want to do first. I take mostly showers the the bathtub modification can wait. God willing I find my way back the mini oasis I had in June and July when my joint pain was 2 out of 10 at the most. Regardless, the few handicap measures we speak of are good to have in place.
For me, travel is exhausting. Last weekend we took a day trip with a bunch of friends. 12 hours start to finish, good friends and great people that I'm totally comfortable with, nothing unusually strenuous. I'm still wrecked a week later. Add in a family illness, the spectacularly bad end of a long relationship for another beloved family member, and I have an idea where you are coming from. It all adds up into total suckage.
One other thing to consider: it's dangerous to get used to feeling better. You forget how bad it can be. I have a tremendous ability to ignore pain. When it has lessened for a time, I seem to have to learn again how to ignore it. I have no doubt you feel every bit as bad as you say, but is the disappointment of having it come back compounding it?
I don't remember--is Humira your first biologic, or do I remember Enbrel in there too? In any case, there are a bunch of drugs out there, and new ones coming online too. If Humira has run its course, there are plenty of other options. It does sound like you are getting back on track.
Humira is my 2nd Biologic. The first was Enbrel and it didn't work. Humira seems more effective though not perfect. Rheumy wants to add Arava soon. MTX isn't an option at the moment,
I agree that it can be dangerous to forget about my pain completely and I am certainly disappointed that it returned, That most likely added to my stress levels. The stress is now gone but I'm a bit anxious from the high prednisone dose. I will work on better dealing with it in the future.
I'm doing all I can to end this flare. I an on the prednisone taper and "banged" an extra Humira last night. Last weeks injection did nothing, This one seems to be helping already. Even though tramadol may mask some of the pain I'm taking that on schedule to "stay ahead of the pain" which my rheumy suggests. What he doesn't suggest is me taking the NSAID Etodolac more than once a day while on prednisone but I take the mildest dose 3 times daily with food, It helps reduce the swelling in my feet and I plan to just take the extra for a few more days. What I can't do is get out and walk around due to this heat wave and heat alert. I believe that will help me as well.
It seems I get somewhat of a reprieve from my symptoms twice a year in the spring and fall for ~5 weeks. I think it may have to do with the weather - those splendid cool humid free days. When I get those reprieves it's actually scary - I keep waiting for the pain/immobility/fog to come sneaking up behind me and knock me down. Durng those periods I hesitate to do too much hoping that I can keep it going.
This RA thing is a roller coaster. To me there is no way around it. I keep to my same medication program no matter what that I've been steady with for 4 years now. I don't believe in changing dosages or medications but keep steadfast. When I get those really bad times I just suffer through and will always come back to my new "norm". I feel that changing anything medication wise just adds to the roller coaster effect.
So I can go from those two 5 week periods of feeling relatively good to spending days and days in a row in my chair using a walker to get to the bathroom. I have acepted this and now just live with it. I feel that this is as good as it will ever get.
It is what it is.
I plan to take your advice and follow my routines more closely including the meds I take. I did start this prednisone taper already so I will see it through for a while longer. There is the benefit of reduced pain while on prednisone but the trade off is a sacrifice of sleep and a degradation of my mental/cognitive health. That's a tough trade off for me and I don't know if I even made the right choice. If the prednisone didn't charge me up so much I'd say I'm doing the right thing. I'm hoping that I can reduce significantly this week so my sleep will return but your point is well taken and if the pain I was experiencing was not so widespread I'd skip the prednisone and ride the flare out like I did last August.
Thanks CT. I will update everyone in a couple days. My status now is improvement in joint function, significant decrease in pain but increase in brain fog due to lack of solid sleep.
I never had brainfog before RA either. Even with hormone running wild.
Insomnia has been a problem for me even before my body rebelled.
It's not as helpful at times but I decided to take Prednisone only in the morning or before early afternoon.
I realize this won't matter for some.
Here's to feeling better.
Sammy