Contributors' Brief Histories
Posted , 46 users are following.
A thread for users to put a precis of their story.
EMIS Moderator
9 likes, 200 replies
We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.
×
Notes on Contributors' Brief Histories
D_J EmisModerator
Posted
Pain was bilateral accross shoulders, down tops of arms, quads and calf muscles.
Moving became almost impossible with pain and stiffness.
Only temporary relief was standing under very hot shower, which still helps now.
Refused to take Pred. until my eye specialist had agreed as I have
Closed Angle Glaucoma and Pred can affect sight.
2 weeks after diagnosis GP started 15mgs, upped to 20mgs after 3 days. Immediate relief!
Have gradually tappered and am now down to 4mgs, extra paracetamol help.
Reduced twice to 31/2 (Eileen H reduction plan) but increased to 4mgs due to pain.
AND know I am doing too much!
I am grateful to this forum for guidance.
Pain always increases when I have overdone things physically or mentally so I stand under a hot shower, rest, or visit my Craniosacral Therapist.
Best of luck to all fellow sufferers.
DJ
Karyjo EmisModerator
Posted
I had no idea what it meant polymyalgia rheumatica. I read about it and understood the symptoms. Endo increased my hydrocortisone at 30 mg / day. The pain has decreased, but some days I still have pain and I can barely be functional. I know the PMR may appear when cortisol level are too low. I wonder if my withdrawal from prednisone to hydrocortisone was not too fast?
Please excuse me my written English is not perfect. I am so glad to have found this forum and to share with you.
EileenH Karyjo
Posted
There is no real evidence that PMR appears because cortisol levels are low - for a long time that was considered but it doesn't cover the vast majority of patients, it is unusual for someone to be found to have very poor adrenal function, it happens but not often.
Anyway, if your endo has put you on 30mg hydrocortisone that is the same as 7.5mg prednisolone or prednisone. That is too low a dose to deal with PMR. The normal starting dose to control PMR symptoms is 15 to 20 mg/day of prednisolone/prednisone, about double what you are on.
If you follow this link:
https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
and look at the last link in the first post it will take you to a paper written by one of the top UK PMR/GCA groups. It explains diagnosis and management of PMR for non-experts in the field. Your endo may find it helpful.
Basically, you need to try higher doses of corticosteroid to get the inflammation under control first - then you can reduce to find the lowest dose that will control the symptoms. But first you have to get rid of the existing inflammation - only then can you look for the lower dose. It may well be that what he has given you will work later, but first you have get to a non-inflamed state using a higher dose for a while.
You have to do your part too - you need to rest, not do all the cleaning and shopping and everything else on a day when you feel well. The corticosteroid only manages the symptoms, it cannot cure anything so you are still ill and must remember that. In PMR your muscles become intolerant of exercise and take a long time to recover from even what was before a normal amount of exercise for you.
I don't think the speed of the reduction was too fast really - and anyway the endo has given you a dose that should be enough for the body to function under normal conditions. It is just you need a bit more to deal with PMR.
I what I have written is not clear to you please ask - and I will try to write it differently. But if you understand English as well as you have written - you will be fine!
Susanne_M_UK EmisModerator
Posted
I was diagnosed with PMR about 5 years ago at the age of 55. At the end of October this year, my Prednisolone dose was down to 5mg per day and I was stable. I began to feel generally unwell with flu like symptoms, sore scalp, blocked ear and pain behind the eyes and in the temples. Saw a new consultant (my previous lovely consultant having just retired). He asked if I had pain in my jaw and when I replied no, he dismissed the symptoms and suggested I start cutting down to 4mg per day. I insisted on a blood test and the results set the alarm bells ringing with ESR levels at 137!
Prednisolone was immediately upped to 40mg. Although I haven't had a biopsy, I was diagnosed with GCA just before Christmas, as I could tick off just about every symptom apart from the jaw pain.
I'm due at the eye hospital next week to check all is well and am currently having blood tests weekly. Thankfully, my ESR and CRP markers are coming down at a steady rate now.
EileenH Susanne_M_UK
Posted
Why are they so fixated on every symptom being present? It happens all the time, they have this "typical" image and can't see past it. Hope that consultant has made a note for future reference. That is a VERY impressive ESR - what was the CRP?
Do keep in touch now you have found us - not much of a start to 2015 but it will improve.
Susanne_M_UK EileenH
Posted
thank you for your quick reply. It's just great to know that other people in the same or similar situation are there.
my CRP was 127, but now way down at 7.
Susanne
EileenH Susanne_M_UK
Posted
This is a link to a thread on this site with further links to other forums and a support group's info site that you might find interesting. Links to lots of other people in the same boat
Susanne_M_UK EileenH
Posted
jean05221 EmisModerator
Posted
So no biopsy.No diagnosos.
I asked to be discharged after 9 days of "chilling", with no gtreatment except Paracetamol and viscosity level of 2.2 ( which apparently, was "on its way down".)
18 years later, after several similar episodes (but no hospital) of increasingly severe attacks, new symptoms began to appear, culminating in a full blown attack with all the classic signs of GCA, in 2012/13.
My GP referred me to a rheumy and I sgtarted taking 60mg Pred, evntually tapering down & off in October 2013.
I never felt well through this entire time and tried to keep myselg going by eating healthily/exercising/supplements etc.
In July 2014, I was floored by another major attack, similar to the previous one, but more severe still.
I lay in bed - propped up because I couldn't put my head on a pillow. in severe pain It took 5 days for the 60mg Pred to get the pain under control. Rheumy kept me on 60mg for 10 weeks to see if that would make a difference this time round.
Our first attempt at tapering down failed at 30/25mg, prompting another big flare up. Back up to 60mgs and that's where I am now - stabilised again and waiting while Rheumy consults with colleagues re my case.
I have a recurrent form of GCA but my own feeling is maybe we haven't been tapering slowly enoiugh during the last 5 years of trying?
jean05221
Posted
First date should read 1997 and you'll be able to read through the typos - I hope.
MrsO-UK_Surrey jean05221
Posted
Starting on 60mg of steroids some time in 2012/13 and reducing to zero by as early as October 2013 is very likely to have caused a return of your GCA, that is if GCA is, in fact, the right diagnosis.
Flares in the inflammation can be quite common in the first 12-18 months of treatment but are far less likely if the steroid dose is reduced very slowly.
Your good response within 5 days of again being put on the 60mg dose can more or less confirm GCA, but that high a dose can also solve other conditions.
It would be interesting to know by how much you tapered down after being at that point for 10 weeks, and how long you remained at each new dose, AND whether, at the same time, you felt well enough to reduce. If you re someone who had raised markers of inflammation at diagnosis, the blood tests should have been repeated and used as a guide, together with your symptoms, before each reduction.
jean05221 MrsO-UK_Surrey
Posted
I agree that the 1st tapering down 2011/13 was a disaster for me.(sorry i got the year wrong in my history). Too quick, no understanding of what was going on for me (on both our parts Rheumy & me)..The fact that I felt ill all the time & was up & done the doses like a yo-yo at the end, didn't ring any alarm bells for either of us!
I now know that I was an accident waiting to happen and another Attack was imminent. I call them attacks Mrs O because months passed on zero Pred before the disease became active in all it's formidable pain!
I tapered down 2011/13 from 60mg in 10mg drops for a month at a time, to 20mg, then 5s to 10mg, 2.5 to 5mg, then 1mg to zero on a weekly basis with ups & down on the way - mainly when i reported stiffness & body symptoms - not head stuff.
I fet ill all the time and it was about then that rheumy diagnosed Fibromyalgia (different set of symptoms to my GCA.
10 months later & GCA recurs with a vengeance - more severe & debillitating & I'm back on 60mgs, this time for a longer period- 10 weeks before tapering : 10mg for 1 month at a time to 50, then 40, then 30, by 5mg to 25 then rheumy appt.
I realise now (from this site) that I should have felt WELL before moving to each new dose. The bloods were good (apart from the eGFR & haematuria levels).
I felt Ok until th 40 to 30, worse from 30-25. 4 days after reaching 25 I flared most dramatically with every symptom known to GCA & back to 60mg again. It took 2 and a half weeks for that flare to calm and I now feel well with only occasional twinges of symptoms.
I wis i had found Patient UK much earlier in my "journey" - I now know how imporatant it is to settle at each level and feel well, have good bloods & no infections!
Aldo How important it is to listen to what my body is saying and if drops of 10mg at cedrtain levels have been unsuccessful, why try the same again?I need smaller drops maybe for longer?
My GPs are wonderful and have responded immediately at each crisis point. Rheumy is, as I write, consulting with colleagues. I have requested a NON MTX regime for tapering & he's investigating Biologics as a support to tapering.
I think I just need achance to taper more slowly, more gradually and more in tune with what my body is trying to tell us!
Ally71 EmisModerator
Posted