so frustrating | Arthritis Information

 

after being diagnosed in feb of 2008 and finally getting down to 1/2 mg of pred..i got a relapse and am now back at 10mgs of pred.

i forgot all the side effects...and found myself flakey..tired, and feeling just so blah..

i so dont want to gain more weight..worried about my heart...but this is just so painful.

i am only 56 but cant imagine how i will feel at 66 if i feel like this now..

i know this is just a phase..and that i will make it through..i did it once and i know i can again..
but i was so bummed..
had to unload to the only group that understands
cathi
Hi Cathi, I remember you used to like to go bowling and we all joked ( cringed) about our jelly bellies....

How are you now that your back at 10mg Pred? Thanks so much Lyn..
your note brightened my very achy day!!
as i was at the start of this whole thing..some days are better than others..and sometimes it is hard to know if it is the PMR that hurts or the side effects of all the pred again.
i had quickly forgotten the hot flashes, the flakiness and the incredible fatigue.
ah well..
thanks so much for being there for the unload..
not many people outside this board really understands this disease ..
they just know i move slower and look fatter!!
cathi
I am very sorry for your relapse  I'm sure it was a daily struggle to get to your best place and now well  it is the nature of the beast I guess   I  am new to PMR but have relapsed already  I believe due to stress and fatigue at work   Have you been able to narrow down any factors that might have contributed or is it just the evil quirks of PMR!    Parker - from what I remember off the top of my head about your other posts I would suggest it's possible you maybe don't have a "relapse" as such but have just come down your steroids too quickly. Remember - the steroids don't cure it, they just control the symptoms so you can live as normally as possible, it's a question of balancing the pros and cons of the steroids for you. Coming down and getting off the steroids may need to be mega-slow once you get to a certain point - MrsUK has mentioned that in some of her replies and recommended a couple of places to find other info. There is no point reducing the dose if the symptoms reappear - and if you have any stress that affects you (not everyone has that problem) you may need to up the dose until the stress is past and they go back down again. But beware of going too high as much as going too low and having to go back up - it's often more difficult to reduce the next time.I wish that were the case  I think I mentioned  I have anew doc who is a whiz kid (Half my age and size!)  I told her I had increasing pain in my hands  despite being on 11 mg per day and she did labs that verified I had relapsed     when I was feeling good before the new hand pain  my sed rate was 19   as of 7/8 it is back up to almost 40  at least that answers my question why was the hand pain getting worse when I was already on meds  Parker: I can't remember how long you said you've had PMR but to be down to 11mg after a couple of months is very fast - many patients need to be on 15 or 20 for a couple of months to get the inflammation under control then reduce by not more than 2.5mg at a time and stay on the dose for a month or so before trying the next reduction. Some people can't deal with going down that much at a time, and do 1mg at a time. And it isn't just mental stress of the sort that you get at work that can up the dose you need - travelling does it for some, doing too much because you feel well will do it too! It's very difficult to work with PMR - and I imagine even more so in the US as you have long hours and less time off than Europeans. In the UK PMR can qualify you for disability payments and also comes under the disability discrimination laws at work so you can get help there - I have no idea if you have anything like that? To keep working with PMR you need all the help you can get. It's not been considered too much in the past as there were few people diagnosed with PMR who were amongst the working population - they had usually retired. Now doctors are realising that it isn't just over 60s who get it - it becomes more common as you get older but people in their 50s and younger get it too. And they still have to work.CathiB, CathieB

As a GCA person (I do not have PR) , can I ask  that when your symptoms returned after coming off pred - where they the GCA symptoms or the PMR symptoms.  As they are quite different I would appreciate some enlightment.

I have only just managed to get down to 4mg and holding.

I was diagnosed in Feb 2007 and have had two 'flare-ups' of the GCA when I reduced to 10mg and had to go up the first time back to 60mg and the second 40mg.  What I did find was that both times I was able to come down to 10mgs quickly.

I was told, when first diagnosed, that I might be one 1 or 2mg per day for the remainder of my life. 

I know there is no known cause or cure and that both PMR & GCA have a mind of their own.
But  I have met people who have been clear of both and remain so, others have relapsed after months or years.   I am beginning to think it is a 'remission' when it goes and it lurks around and comes back.  I could be wrong of course.
Nancy..
I am so sorry that you got it again after 5 years..same things happened to me..suddenly sed rate and esr rate was really high..but i knew something was going on..i just didnt feel..right.
but i think i wrote in another post that it was when i got off my anti depressents that this seemed to agrivate it again..does that help me with stress in my life..i guess so..as it was both the first time i got off anti depressants when this all began..and getting off them again started the second flare up.
it was almost as bad as the first time..but i am beginning to feel a bit more normal.
forgot all about those wonderful hot flashes..and how heat affects me with the pred...

i do know that my dentist told me that i had a varrigated toungue..a sure sign of an autoimmune disease..and i have had that my whole life..so i guess i was prone to this..

so i am sure that the anti depress..helps me manage the stress alittle..keeping it under some kind of control..

however, i try to take only a minimal dose.
so maybe that would be something you can look into...just a thought..
lets hope this is not for life..
oh that would really be horrible.
take care..nancy...
give yourself some candles...perfume...that and classical music along with pred seems to help a bit..(pamper pamper)
cathi
Mrs. Uk
I have Pmr, but had some symptoms that made me think that it might have been GCA just a few weeks ago. Aching in my jaw, etc..
When the rheumy saw me, she took my blood the esr rate seemed to give the whole story and it was really very high..but she didn't think it was high enough for GCA. she gave me alot of pred however, in case those symptoms continued to present.  which they didn't fortunately.

She did tell me however, for the first time, that the statistics are 70% of the people who get this relapse.

That she did not tell me when i got this..she acted like..well, this is about 5 years start to finish and by the 3rd year you wont even know it.

but then when i got a "flare" as she called it, she said this is so common..that it presents in 70% of the cases. so i guess this is how it goes.

i tend to think this is a remission thing as well. as i was shocked to find that it was almost as bad as when i first got it..i did get it under control quicker..but frankly this summer i feel about the same as the first summer i got this. i have to be in air conditioning or i am simply aching so bad i can barely move in the heat.

was out for the 4th of july..at the parade (good ole america) and was laid up for 2 days after that..and that was with the pred.

but YOU mrs. uk..you are helping us all!! and we sure appreciate you!! sooo much!! thank you so much for all your support..i am so glad you are at 4mgs!! yeah!!!

thanks again
cathi
CathiB

I just want you and others to know, that you all help and helped me to widen the knowledge I and others like us need.   We are a biggish family, who have an auto-immune illness, which because it is not life threatening and occurs mostly in women and we all look well.  PMR & GCA do not and never have had the attention paid to it except for some dedicated medical professionals. 

25 patients, together with Professor Bhaskar Dasgupta, decided this situation had to change and we have managed to set up a Charity in the UK  - PMR GCA UK dedicated to raising the profile, setting up support groups and finding funds for research into cause and cure.  It won't happen in my lifetime, but from acorns tall oak trees grow.

In the meantime Cathi  - go to www.pmr-gca-northeast.org.uk and look under Useful Information, guidelines and symptoms on both PMR and GCA are there.  Download them and keep them to hand.  The last thing you want with your PMR is GCA. 

Good Luck in this strange journey we are all taking together.

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