Ugh, doc says to start steroids | Arthritis Information

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So NOT what I wanted to hear!! I sent my sarcoidosis doc a long email letting him know that I am responding to the remicade pretty well but that it only lasts about 7-10 days than WHAM, it all comes back with a vengeance. I asked him about the increase in my cardiac symptoms and he said yes its the sarc but he didn't feel the need to do any further testing than the echo cardio gram I had this fall and the EKG's which showed a prolonged qt. He said if I do have actual granuloma's in my heart, it wouldn't change the treatment at this time.

I am currently on 5mg per kilo (I think that's the proper way to say it) for the remicade dosing once every 4 weeks. He said he was going to check with the Cleveland Clinic to see if he can raise the dose or the frequency of the infusions but he didn't think so. I asked him about cellcept or arava and he said he didn't want to do that as it was a dangerous combo with the remicade.

He suggests that I do 20mg of prednisone a day for an entire month than I might be able to taper down. I was on steroids for 1.5 years and got off them last fall and really hate to go there again. I have been supplementing with them a little just before my infusions to get me by but we all know the longer we are on them, the more side effects we get. I am already feeling pretty depressed and the steroids really bring me down and turn me into mega bitch. I tried explaining to hubby how they make me feel and he says well if you know its the steroids that make you feel that way than you can change it. I told him that's not always the case and that he might need to cut me some slack if I am a bit grumpy and he wasn't real receptive with that-he just doesn't get it sometimes.

I am not sure that doing the steroids for a whole month instead of just the week before my infusion is going to change anything long term. What do you guys think? I wish there were more options........ hi michleb sorry dont know anything about remicade.. i have needed to take pred
all the time.. 7.5mg whith a dmrd held it together.. i have found 20mg put me on high
7.5 mg made me moody... the in betweens are ok...my hospital know i regulate
my prednisone..  i had to find a balance..

Boney


I do not know if this will help you any... but here it goes...

 
I was having a time with my RA, and RD told me to take 20mg of pred, 2 weeks before my Remicade infusion, and then to go back to 10mg after I got my infusion. I was not sure if it would help, but it did.
 
I got my infusion and dropped back down to 10mg of pred, and I have had pretty good result so far. Little to no swelling... not much pain... no need for pain meds... and I can move around a whole lot easier.
 
I did not have this kind of result with the Remicade the other time I got it. I am quite happy with how well I am doing so far. Last time it took me 2 weeks to even get to the point I am at now. I guess because the Remicade had to work harder with all the swelling I had going on, and this time my swelling was down so I got to see it work faster. I am just hoping it will last longer than 3-4 weeks... because I will have a whole nother month to go.
 
So... maybe taking the dreaded pred is what you need to get you over the hump. Give it a try. And if you feel bitchy just occupie yourself with a hobby, since you will feel a little better with increased pred.
 
Much hugs to ya!
 
 
I would rather take pred than any other.  Prednisone's side effects are very very rare except the bone problems.  And even the bone problems haven't been confirmed as being caused by prednisone because too many people don't get bone problems.
 
My doctor stated that there are pills to repair the bones if I do start to get that side effect, so i shouldn't worry.
 
None of my doctors like biologics yet, they hate the side effects that you can't fix.
 
I guess it is a choice of the person.  My type of RA attacks lungs, heart etc. as well as normal spots, prednisone is the only one that helps me so i don't have heart failure etc. by keeping inflammation low in those areas, so it is my favorite so far.
 
But it's a choice.  Everyone's RA is different, most don't have organ involvement, many do, some have a hand only or a knee, others like me have joints from head to toe effected.  All these things change the way we think of our medications.
 
I would say that if you want to try other meds, you can do so, just tell your doctor, methotrexate, arava etc. work well on regular people (not me) but liver problems occur often and you have to stop the meds.
 
No drug is side effect free, you just have to do internet research to decide which one you trust the most.
 
I know people over 20+ years on pred without one side effect.  It is a personal decision that i wish i could help you with, but it's something that's up to you.
 
God bless.
well put bubbagump.. Hi Michele, I was worrying that you're Dr. would prescibe Pred for you and I know how resistent you are to taking it.  On one hand I don't blame you for feeling as you do.  If felt terrible on 35 mg. of Pred daily for 4 years.  But.......your sarcoidosis is severe and out of control.  Who knows maybe this time around the Pred. will help because of the Remicade.  They may kick start one another. Talk to your doctor about Joonie's pred. dosage and treatment.  That sounds like a reasonable approach.  Since your illnesses are different it may not be the right Pred. treatment for you but I'd discuss it with my RD. 
 
I also have a cardiac nodule but it's  RA related.  My only symptom to date is a bundle branch block and even that's intermittent.  So far I haven't needed meds.  Pred. will reduce and/or keep nodules from forming.
 
If you need Prednisone to control sarcoidosis then do it.  Either your husband will understand or he won't.  Don't  take a medication that may help you because he just doesn't understand.  It's your life that's at stake.  You seem to be getting better but it's such a slow process and believe me I understand not wanting to take Pred.  I have bone loss due to long term Pred use but because of aggressive treatment by my RD, my bone density increased by 2% last year.  I have steroid induced cataracts but they can be easily removed next year.  My side effects are correctable.  You have to weigh the outcomes.  Lindy
 
Thanks everyone.  I did take them this morning and I will take them at least through my infusion next Thursday.  The remicade is helping but it only last 7-10 days.  For the last 2 months, I have taken a weeks worth of steroids the week before my infusion, like I am doing now.  I guess I am not sure what more benefit I will get from taking them for a whole month instead of the week.  I would assume it would probably help me not flare as bad before my next treatment but when I weigh my personal side effects of extreme depression (which I already struggle with) the weight gain and the bitchiness (i have to be civil to the public at work, not just hubby!) I am not sure if its worth the continuing dosing or if I can just get away with taking the week before only.  Hum, I guess only I can decide.  I am just so wore down from being ill for almost 4 years now, I just can't make any more decisions! I guess I will probably play it by ear.  If I am tolerating the side effects, I will stick it out, if they get to be too much, I guess I can always stop the at any time.  Hopefully, he will find out that we can raise the dose or frequency of the remicade than hopefully the steroids won't be needed at all. 

It just helps to write it out and vent about it!! Thanks!!
Hope everything works out for you. Keep us posted.
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