Hi all
On day eight of reducing pred from 20 to 15 feeling rubbish today. The pain in my neck, shoulders & arms has returned feeling so tired. Could it be the pred withdrawal ?
Feeling the pain: Hi all On day eight of reducing... - PMRGCAuk
Feeling the pain
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Stanley123
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•
Hi Stanley123
Sorry to hear you're feeling not so good, I'm wondering if the drop from 20mg to 15mg has been too much, maybe 17.5mg might have given your body less of a shock? It's a 25% drop & the general rule is no more than 10% but some people can do the 20-15 without issue but it is a big drop.
I always found it was about day 10 or 11 l 'felt' the drop, now I use the slower method of tapering then it's not so hard on your body.
Best Wishes
Mrs N
Stanley123• in reply to
Thanks Mrs nails
Have been instructed to do this by rhuemy not got much faith in her. She says I need to be off preds by April not looking forward to reducing so quickly have to drop by 5 every 2 weeks.
• in reply toStanley123
Ah Stanley, that's going to be hard going for you, does she have a plan & is she reducing you so quickly for a reason? How long were you on 20mg?
Mrs N
Stanley123• in reply to
I've been on 20 since Nov 16. She wants me off preds then she can test again as she doesn't think I have pmr as she says I'm too young I'm 53. I hope that she's right but I don't have much faith in her.
Thanks for listening
Stanley, I am 54 and have PMR - she is definitely wrong! x
• in reply toStanley123
There are a couple of ladies (l think) who've had to do this & been re-reviewed. PMRpro will know, l'm sure.
You could see your GP in the meantime & consider some pain Meds, they don't usually work with PMR pain but if you don't have PMR then pain killers may help.
Very Best Wishes
Mrs N
And keep us updated.
Stanley123• in reply to
I've rang my Gp she's ringing me back after morning surgery so grateful for this site otherwise I would have believed everything the rhuemy said.
PMRproAmbassador
I think you need a good discussion with your GP.
I'm not saying the rheumy is wrong, you may well have something else. But she is totally wrong in saying that the reason you can't have PMR is your age. The guidelines all now say "over 50" as a general rule - and that does NOT rule out someone younger having it. Even the top experts admit that people under 50 may have it - and judging by the people I have met on the forums in the last 8 years there are quite a few in their 40s who have been told they have fibromyalgia (despite raised inflammatory markers), depression, somatism or "your age". All of which were wafted around for me in my early 50s. But 6 hours after taking 15mg of pred I experienced a minor miracle.
However - does she have any other reasons for suspecting you don't have PMR? I would want to hear more than an incorrect "too young". I have to say - it infuriates me that there is this fixation on age for PMR and GCA. It may not be COMMON for younger people to have it, but that doesn't mean it doesn't happen. And when they refuse to look for it they won't recognise it: none so blind as those who will not see. BUT - and it is a big but, there are a few things that present very similarly to PMR and which respond far better to other drugs. So a correct diagnosis is important.
When did the pain return? Steroid withdrawal usually happens immediately you take the lower dose and then improves over the following couple of weeks. When you are OK at first and the pain creeps up on you it is more likely the dose is now too low and the inflammation is building up. What other symptoms do you have? You do have an opportunity now to think carefully about your symptoms - have you night time pain, for example. If so, when? And how did you respond to the 20mg the GP gave you? Was it a very quick and almost complete improvement - or was it just a bit?
Hi pmr pro
The pain in my neckshoulders & arms started to return on day 5 of reduction I'm now on day 8 & it's really quite painful feeling drained. My Gp started me on 15mg originally the hip pain went straight away the shoulder & neck pain didn't really improve until I increased to 20mg that's when the shoulder & neck pain went altogether feeling a little frustrated waiting to speak to my Gp.
Thanks for your reply.
DorsetLadyPMRGCAuk volunteer
Hi,
Totally agree with PMRpro, she has just saved me a lot of typing!
You do need to discuss with GP, and go through the other things it could be. As others have said 53 is young, but certainly not unheard of. Do hope you get some resolution and a definite diagnosis soon.
Reciprocated - you saved me a load of typing earlier! The bit you said you had tucked away - where was it from?
DorsetLadyPMRGCAuk volunteer
Moi!
I wrote it as a message to someone in the past, and then when I was going to do the same a week or so ago, I rummaged around and found the original, then saved it to my Notes App on iPad, so I can copy and paste and amend slightly as necessary.
Once a civil servant always a civil servant!
My royalties😉,!
I have a whole section over on the NE forum which is collected past posts - from the old forum as well which i rescued when it died. But most of them I have written so many times I can do them in my sleep - as fast as looking for them and editing them!
But I do rejoice when you have said pretty much everything I was going to... 
Ditto,
Great minds and all that, although your information is always much more precise than mine - you're scientific, I'm a bit more down to earth countrywoman - but between us hopefully we get the message across! Which is the aim of the game!
Hi all
Just spoken to my Gp she's not very happy as her hands are tied re the preds as she has had strict instructions from the rhuemy not to get involved with the steroids. She said she's not happy with the report the rhuemy sent to her said it was very dismissive. Been told to contact rhuemy see what the outcome is if I don't get any joy then my Gp will get involved says she thinks I need to see a different rhuemy.
Thanks to all of you lovely people on here just for listening & giving good advice.
I agree with your GP - dismissive rheumies are an occupational hazard it seems! Don't quite get why - and I hope all their sort develop PMR and can't get a diagnosis! I can be really quite a nasty person...
Haha well said pmr pro.
I'm scared now PMRpro. Has anyone seen my teddy?.... 
Perhaps you threw it out of your pram????? 
THEY TOOK THAT AWAY FROM ME TOO.... (Screaming and sobbing pathetically...) 
What - got to stand on your own two feet now?
At only 60? (whimpers, sucks thumb, falls asleep)
Ah! Humour, just in the nick of time. Thanks! 😆
My money's on your GP and a different (better..) rheumy..
Keep us posted!
I'm with your GP but think it's disgusting that rheumy being so bossy - has she ever suffered as we do? I doubt it. Keep pushing for what is right for you xxx
Good Luck 🍀
Mrs N
Greetings Stanley123
As the others have said here, sounds like you've reduced too much, too quickly (and not according to the tried and tested, recommended Maximum of 10% of the previous month's or longer period's dose guideline). The cause of your symptoms? My money's on a combination of a flare in PMR symptoms (pain, stiffness, tiredness) AND Pred withdrawal symptoms (deathly fatigue) as a result. Been there and got the T shirt!
I don't know where your rheumy (especially.. ) is coming from with this advice if indeed you have PMR. It sounds like it to me.
My understanding is that with PMR and / or GCA, once on the preds, and the longer you are on them, the more slow and gentle the tapering needs to be (see the Dead Slow Nearly Stop method here, or my equivalent 'Escalator' method). This is to help to avoid or at least minimise not only the withdrawal symptoms from this powerful drug but also the more serious risk of an adrenal crisis. From what you describe about your context, reducing the preds as fast as your rheumy is suggesting (15mgpd to zero in a few weeks - and you're struggling already at 15?) can be a very dangerous exercise indeed - unless she knows something that I and the experts here don't!
As for PMR at 53? Again, although a bit unusual it's not unheard of (as SuzyTe, and plenty of other 50-somethings will confirm). I caught it at 57.
Hope this helps, you're in good and expert company here
MB
You have to bear in mind his rheumy WANTS him to reduce rapidly so she can see for herself as she doesn't believe it is PMR on age grounds. Which isn't justified as we all know.
It does seem that a fair few rheumies are very sensitive little bunnies if someone takes an executive decision to start treating a patient before they see them. But in that case, they should be more forthcoming with accurate justifications for their actions and be less dismissive. Which is just rudeness - perhaps she really wanted to be a surgeon...
Well put PMRpro..
Thankyou I just wish the rhuemys knew as much as people on here the one that I saw is actually stealing a living made me feel that I had imagined the last 12 months.
I don't know what planet some of these rheumatologists come from. I was on 20mg and told to reduce to 15mg by my ex rheumatologist, I only had 5mg tablets, I did not know you get smaller quantities. It was a total disaster.
Sorry for your experience I have to see her again in 10 days. I think she will soon be my ex rheumatologist not looking forward to seeing her again.
Hi Stanley / all here.
Apologies for this long reply (as usual!) but I thought it worth expanding on the perennial theme of Patient vs. Doctor dilemmas around trust and information.
Well, these unhappy experiences with GPs and / or Rheumatologists seem quite common on this forum and are naturally a disappointment when we want to trust their knowledge and experience of PMR and / or GCA and offer appropriate, reliable treatment for them.
If it helps, and to make sense of things from the Patients' side:
Yesterday, I attended the Bristol PMRGCA Roadshow - a very enjoyable and well-organised event. One of the Speakers was Prof. John Kirwan, an authority on PMR and GCA. Another, Kate Gilbert, was a great host and facilitator of the event generally (thanks Kate!). All of the speakers were well-informed and prepared, and clearly passionate about their work with PMR and GCA research, treatment, and the way forwards around raising awareness of, and the need for greater research funding for more effective diagnosis and treatment of this chronic illness.
In Prof. Kirwan's inspiring presentation, he demonstrated how PMR, although statistically a (q) 'relatively common' health condition in context, is all the same 'new' to many GPs (and some Rheumies) who, due to their overall work / case load, might only see one or two PMR patients every year - or even fewer. With GCA, the recorded stats for consultations and effective diagnosis are even fewer still. And that doesn't allow for those with PMR / GCA symptoms who don't report or seek help for them. Mmmm...
My conclusion?
Like / agree with it or not, we PMR / GCA sufferers and others with similar, complex illnesses sometimes need to 'lead' our discussions with busy, over-loaded Performance Managed GPs (and even Rheumies who we would hope to be up-to-speed with these types of health conditions!) with accurate descriptions of our symptoms and reliable facts, information and data that we can gain from reputable forums like this: and to suggest suitable treatment options from our own research.
It seems that many GPs and even some Rheumies just don't have sufficient knowledge about these health conditions and suitable treatments, nor the resources to research them in between their busy schedules. A bit like the tail wagging the dog? But, sometimes, this is how life works.
From the Clinicians' side: Yes, some medical professionals might not like being challenged or 'up-staged' by their patients in terms of their assumed superior knowledge (or are plain arrogant in a few cases!) - but this is our challenge too, in terms of educating the 'experts' when they are floundering too.
As I write this, I'm opening the wine. I suspect that more than a few GPs and Rheumies are doing the same!
Keep smiling on the journey - and keep communicating..
MB
• in reply tomarkbenjamin57
Morning Mark
Good to read about your visit yesterday to the Roadshow, we came down to Birmingham yesterday & are going to the Roadshow at lunchtime. I'll report back later.
Mrs N
markbenjamin57• in reply to
Thanks Mrs N, have fun!
be brave
Hi Stanley123...I just joined this forum last weekend. I AM GOING THROUGH THE SAME THING!
I just turned 53...ive been to two rheumes and an internist and none of them are convinced that I have pmr. the first rheume originally sent me away w/o any medicine. I started noticing pain in my shoulder in early October and the pain spread to both shoulders, both upper arms, both hips, both thighs and both knees.
I made my physiatrist put me on pred; I found out about pmr myself. She prescribed 8mg methyl pred for two weeks. That didn't work. Went back to rheume and she changed me to pred and incr dosage to 40mg. My face blew up in three days plus had many other side effects that I couldn't live with. So then, came off...I went from 40 to zero from midDec to end of Jan.
I tried a month of celebrex and muscle relaxer and it didn't work. I was in agony through Feb and started again on 20mg pred this past Sunday when I could no longer get dressed or sit to go to the bathroom. It's made a world of difference!!! I still have a little pain and stiffness but can easily function.
My sed rate is normal. my crp is raised but not above 5. the docs keep taking blood tests...over and over again. i've also had a full spine xray and chest xray. today i'm seeing a neurologist.
I see the new rheume next week (also ten days)....it will be interesting to see what she will want to do with the dosage.
Thankgoodness for everyone here! I will not allow her to reduce more than 10%.
We have to be our own advocates! These docs just don't know enough.
I couldn't tolerate the drop from 20 to 17.5. I'm now at 15 as of today but going .5 per week.. that has been ok. Just a bit moody on day 2 of lower dose. No idea why it hits me that way, but if I've learned anything from reading these forums and my own 3 month experience with PMR is that I have to accept what comes along and try to listen carefully to what my body tells me.
0.5mg per week is quite fast at this stage. Mood changes with changing pred dose are very common.
WHAT DO YOU MEAN ABOUT MOOD CHANGES?!!!!! It doesn't apply to me... (rocking, clenching fists.. )
That's cos you are male and no-one would dare to suggest men might have fluctuating mood...
FLUCTUATING.. MOOD..? WHAT DO YOU MEAN?!!! (clutching teddy nervously whilst hiding behind the sofa)
I have learnt almost everything I know about PMR from this forum and from Kate Gilbert's book and Dr Daghupta's research, but this forum is my lifeline and without it I would feel lonely, isolated, confused and depressed about a condition I have been left to deal with pretty much on my own. So with the advice here I have taken the lead on asking for the medical services and information I need and getting myself the best care available within the resources of our beleaguered NHS.
Off for my dexascan today, something I requested before I start swallowing the AA.
Hello Zebedee44
I have the same experience as you. This forum is a God send. And when I see my Rheumy tomorrow I am fueled with info and courage to stand up for myself.
Thanks all!
Hi Zebedee44
Glad you've got your appointment for your Dexa Scan, I'm off to the Birmingham Roadshow & shall be meeting Kate later.
Best Wishes
Mrs N x
I too enjoyed the Bristol road show, though I couldn't help but be envious of the way the various specialities seem to be working together in Bristol and communicating with each other, and as Mark has said, their passion for the subject.
It was inspiring to meet, albeit briefly, so many women and men who are trying to get on with their lives and not let PMR/GCA define them. But I did find it pretty amazing when Kate asked how many people had previously been fit and healthy before their diagnosis and almost every hand in the room went up!
It IS hard to feel that you are doing battle with the GPs and rheumies who you want to trust and have confidence in, rather than working together. My appointment on Monday with ENT to discuss the ear pressure which has been one of my most bothering symptoms was a case in point as he dismissed it being associated with my GCA as he said the inner ear was fed by a different artery within the brain that wasn't likely to be affected. When I pointed out (very politely) that a number of sufferers with GCA seem to have ear problems and that a study is currently under way he did backtrack a little. I have to have an MRI scan to dismiss any possibility of a brain tumour, but otherwise am offered a visit to the audiologist to discuss hearing aids. I missed the end of Tuesdays roadshow as I had to catch a train back to Dorset but I wonder if ears were mentioned at all?
Meanwhile I am steeling myself for the next pred drop from 10 to 9mg and hoping my GP has prescribed some 1mg tablets. Yes, I too find that it's on day 2 and 3 after the drop that my body has a sulk. So far I haven't had any flares, but I'm not counting my chickens. Tiredness is awful, although I need to find some energy to do more weight-bearing exercise as my dexascan wasn't brilliant and I don't want to take AA or riseondronate.
Thank goodness for you all!
My wife went through similar circumstances when she dropped from 10 daily to alternating between 10 and 7.5 every other day. A week or so later, the symptoms started coming back. The rheumy still wanted her to keep reducing the dosage, just because the blood tests showed no inflammation. She is opting not to see this rheumy again. Now working with her GP and is back up to 10 daily, feeling better but not totally painless.
Thankyou for your reply. Hopefully that's what will happen with me would just rather deal with my Gp than the rhuemy I'm seeing at the moment.
I have to say...I agree with everyone about this forum being a godsend! 70..perfect health and overnight....well you know the rest of that story! I am in the US, and can tell our healthcare system is quite different. I have access to my rheumi by email anytime. I was diagnosed in nov, 2016. Pretty much diagnosed myself ( thanks to all of you!) and called for an appt with a rheumi straight away. She diagnosed me that day and started me on 15 which worked wonders, however after a few weeks I did still have a little pain in shoulders, and pretty bad carpal tunnel, so she upped me to 20 for a few weeks. Back down to 15, then 12.5, and today is my first day on 10. No problem at all and really, feeling pretty normal, except for pins & needles in my 3 fingers of my right hand (the carpal tunnel). She wanted me to stay on 10, however I am a little paranoid about a flare (no time for that!). So I emailed her today for more 2.5 tabs and asked her if I could do the slow method I had told her about and she agreed. She is wonderful and I think appreciates a patient who wants to be involved. I appreciate that! Especially when I hear about some of the stories about rheumis.
I think I've sort of asked before, but if I am still feeling ok tomorrow on 10 can I skip the slow method and just stay on 10 for a month? Or can the flare come after a few weeks on 10? I plan to do the slow method for sure UNDER 10.
As far as your rheumi, Stanley123, I would dump her like a hot rock and find someone who cares! We are having our own political challenges with healthcare at the moment, but so far it is easy for us. I hope it will be as easy to change for you! Good luck!
Sometimes I think we should all just skip the Doctors and just come here....where the wealth of information is...thank you to you all for being the voice of experience and reason....it certainly has made this disorder much less traumatic for me! ❤
If the 10mg is very slightly too little it can take a few weeks to notice inflammation rising to the level that will cause you to notice symptoms. I think you may need to consider having the carpal tunnel considered as an add-on to the PMR than may have to be managed independently (surgery?).
However - can you not get 1mg tablets? That allows 1/2mg reductions if you need them later, a lot less than the 1.25mg which is about the best you can manage with 2.5mg tablets, most people find they crumble too much to quarter.
You ARE under 10mg from now on...
Yes, I have 1mg, 2.5mg, and 5 mg, all umcoated. Plenty of each....I can't believe how inexpensive this drug is!
If the 10 IS slightly too little and I DO recognize symptoms in a few weeks....will that be a "flare", or should I just stay on 10?
And, thanks, PMRpro.....you are as important & valuable to me as my rheumi! ❤
Now if you could just tell me when this moonface will go away as well as 10lbs!!!
It will be a flare if you ignore it! A flare happens when the dose of pred is not enough to clear out the daily dose of new inflammation - it may be because you have reduced too far or it may be that the illness has increased in activity, the result is the same. If you act as soon as you notice it you may not need to change dose much, a couple of days of a bit higher dose (say +5mg) and back to a bit higher than you were at, in this case 11mg and see how that goes.
Yes - plain common or garden pred is cheap as chips. Which is why I find it very difficult to believe they will ever agree to approving Actemra for PMR - except possibly for patients who cannot get off pred at all or who have frequent flares.
I think this is the crux of it PMRpro:
1): reducing too far (and /or fast?): and / or 2): increased inflammation (for whatever reason, including 1 above?). Add into the equation the many other factors that can contribute to, and the relative timescales for flares to manifest themselves (or subside) and by how much percentage-wise to 'nudge' the dosage back upwards relative to the pre-flare level. A recipe for confused.com?
I'm sure one of the trickiest bits in the process for many of us is making some sense of Cause and Effect with flares when reducing the preds - or even if not reducing? There are so many variables in the process of trying to achieve some equilibrium in managing PMR symptoms, and most of them not easy to connect with one another. No wonder people get fed-up
Speaking of flares, I first started getting them at age 17 (40-odd years ago). Checked my wardrobe today, I still have a couple of pairs. Think I'll dust them off and wear them to the supermarket tomorrow together with my paisley-print kipper tie, shiny silk shirt with mandatory huge collar and 6 inch platform heeled 2-tone patent leather shoes. Saturday Night Fever / Stayin Alive? I blame the Bee Gees....
Keep smiling and Happy Weekend all!
MB
I think I'm very glad I'm in Italy and not in Weston-super-Mud ...
You don't know what you're missing in WSM PMRpro - Bee Gees' tribute bands (17 of them at last count), Des O'Connor's '125 years in Showbusiness' awards, AND Live, televised Celebrity Mud Wrestling on the beach (courtesy of the local Women's Institute). What more could you want? 
Nothing - reminds me why we migrated...
I am not sure my rheumie has heard of email, I think they are still at the carrier pigeon stage. On the other hand they may just don't want to be bothered. When I have an appointment every four months they then write a letter which says, between the lines, don't call us we'll call you!
Just an update my rhuemy rang me after 2 days waiting for her call. Told me to get in touch with my Gp & ask for gabepentin pain relief she said I will feel unwell while I'm reducing steroids got the impression she couldn't care less.
What an earth can Gabapentin do for PMR? I do wish some doctors would spend at least a little time about finding out about what drugs are for and their reactions.
It has myalgia in the name - so what works for fibromyalgia must work for another myalgia...
How stupid of me for not realising they are really the same thing, both are painful! Of course. I think I am becoming suicidal with what I am hearing from some of these so called medical professionals.
Keep a steady head, piglette. From your previous posts, I'm sure that you are not 'stupid'!
Just make sure you are in charge of the facts / data if and when you feel you need to challenge the 'experts'. You owe it to yourself to do your 'homework' (research) around these things when your physical and emotional health and sanity are on the line. The experts can be wrong, too, like it or not.
In the meantime, you are in great and very reliable company here if you need to let-off steam!
MB
MB I was talking tongue in cheek!! It is my appalling method of sarcasm. I come from a medical family and have been working with the pharmaceutical industry for the last thirty five years, so have a certain cynicism.
Oh, sorry piglette! (was taking you too literally..). I should have read your previous posts first
Piglette - It really has been quite a couple of weeks again hasn't it!
You are right, it has been unbelievable!
Why does it go in cycles? Is it the weather?
Stanley - she obviously hasn't got a clue! Must have slept through all her pharmacology lectures - if she bothered to turn up in the first place.
Gabapentin is NOT a "pain relief". It does sometimes help with fibromyalgia which is a problem with perception of pain. PMR is inflammation. That's why pred is used. And the way to deal with steroid withdrawal pain is to reduce in small steps.
You are right pmr pro. The more I speak to her the less I have faith In her says I still have to reduce preds by another 5 on 14th even though all the pain is returning.
this happened to me in Dec and I was put back up to 20mg by the rhuemy dept. Am still on 20mg at least until the middle of April but mostly pain free at present. Am suffering a lot of steroid side effects such as weight gain,sweats,swelling and mild depression over the former but am sticking with it!
thanks, it is a help to know.Only diagnosed in November 16 and still very new and confused Will have a go at low carb diet but have a heart condition, as yet undiagnosed, so it is difficult to determine what diet I need.Thanks again for the support
I also have a "heart condition" - if you want to call atrial fibrillation that. It was almost certainly caused by the autoimmune part of the PMR damaging the electrical cells. Diet really doesn't make that much difference to that - I was told originally I needed to diet for weight loss (I knew that, PMR and pred had done their worst) and lower the cholesterol (can't/won't take statins). So four years ago I was being told to avoid all dairy etc etc. I didn't lose weight and the cholesterol stayed the same. I switched to low carb - lost the weight, cholesterol stayed about the same. But the HDL cholesterol is now very high - all good there then.
And low fat is now discredited for cardiac protection - it merely adds carbs in the form of sugar.
Just want to thank you and Dorsett lady and everyone on this site it really helps. I have been experimenting with a small tweak of the dead slow system. I use tablet cutter to cut the 1mg. Tablets into smaller portions not just halves. Despite owning 3cutters I could rarely get equal halves so I had big halves for a few days then smaller halves. In fact more on this line. I do waste a few tablets but as I know how cheap I think it justifiable, also it is fiddling and not precise, just wish they would make 0.1mg tabs. patsy 69
I know what you mean about tweaking the tab dosage patsy699!
If it helps, here's a fictitious post on the topic (from my most recent article here):
Pillsplitterprof17:
"Has anyone here reached the magic 17.00000 (to 5 decimal places, corrected) mg preds threshold and had difficulty in getting below this? I am a professor in micro-science and have calculated that, by using a sub-atomic particle splitter (borrowed from my Ph.D teaching work at Bristol University), I can taper by 0.000000002 mg every 6 minutes to reach my goal of 17.4 mg per day by 07.00 hours on 19th June 2032 (GMT). Although this means I will never get more than 5 kilos and 45 grams of sleep for the next 15 years, 4 miles, 2 metres and 15 pints (+/- 2%), I think it’s worth it to stay on track. What do the experts here think from a scientific perspective? My main concern is that I may have exaggerated my margin of error by a few acres. Excuse the hurried query, I've been under a (xxlotxx) bit of pressure at work recently and my wife has just left me. Responses by spreadsheet only please. Oh, s*d it, someone just tell me what to do - anyone out there fancy another beer.. hic. :-/"
Happy splitting - and don't drive yourself bonkers in the process!
MB
Thankyou for your reply. I have had more sense from you than the non existant cardiology dept despite having tests for over 4 months! I got to know I had aortic stenosis, grade 4, when on the operating table from the surgeon and later in a letter to my Dr. Since then, despite more tests (CT Scan) , have heard nothing. My Dr is also confused and has requested that I see a consultant over a month ago but, so far, nothing and I have so many questions. I am reluctant to go back to my Dr as I he was really defensive and ideally appeared to want me to just go away. I also have PMR and GCA diagnosed by the rheumatology dept and am taking steroids since last August. I started on 40 mgs and have now reduced to 20mg but seem stuck on that for the last few months as every time I try to reduce I get a flare and my inflammation markers go up. I have so many side effects / symptoms but much less actual pain, for which I am thankful.
I am getting really depressed and often feel unwell and bone wearily tired but am unable to work out if it is the PMR/GCA, the steroids or my heart condition. I haven't worked since last July when I first became seriously ill and need to find some form of financial work soon but finding work that I can do with out causing any more damage is difficult,
I am so sorry I sound so pathetic. I just get really tired a lot and find arguing with all these professionals so exhausting.
Thank you again for your post. It has helped me talk about this situation which I am finding difficult to do with any one else.
Best Wishes
I think the getting sense out of medical professionals can be soul-destroying sometimes. If they do condescend to explain they don't can't get it into English, it remains in medical-speak! And seem to have a difficult time empathising with the patient's situation.
You have been through the equivalent of a bereavement - adjusting to chronic illness is very difficult for anyone, when you have no idea what they are saying it is even worse. When my a/f was identified ( as the result of a bad drug reaction and once it was managed I realised the "funny feelings" I had had since PMR started had gone) I had a horrendous 6 months adjusting and it felt as if I stuck in a morass of something nasty. And I knew the theory! My GP was lovely but I had to get through it.
Perhaps a chat with your GP might help? I do understand the difficulty you have talking about it - but truly, talking helps. Even if it is only here on the forum. We've all got a fair bit in common, no-one is going to roll their eyes and heave a sigh. But your GP should be able to point you in the direction of some talking therapy (even if it is next millenium) and antidepressants aren't always a bad thing.
I reduce mine and nothing, l put on over 2 stone, had double pneumonia. I also have a bone disease. I still feel rough due too double pneumonia, l had great news though, awarded p I p benefits, l don't have to worry about money now, can get myself well, then l can start my business. I hope it all works out for you
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