Relapse of PMR after 4 years in the clear. Male aged 69 and down to 5mg prednisolone from 20 mg on March 1st as per my GP. So far so good but anticipate that the next bit will likely take a lot longer if previous experience is anything to go by.
‘Pleased’ is probably not the right word but note that Pmrpro, Dorset Lady, Sheffield Jane & maybe Mrs Nails are still on-board as their sound advice was very helpful last time and was invaluable.
Oh yes - you don't escape us that easily!! Sorry to see you back
Haha! You make it sound like 'boot camp'! I suppose it is in a weird kind of way.....we all come in as newbies.... naive and armed with the determination of an Olympic athlete to conquer the disease and 'get off' the steroids in world record time, only to be given a reality check and some firm but fair lessons & advice on how to actually do it in the real world!😀 ......to be honest, I for one don't particularly want to 'escape' the support network I've discovered here. Even if I was fortunate enough to enter complete remission, I would still want to communicate and engage with you all, if only to offer some reassurance or help to the new folk coming onto the forum. I do understand completely though why some people would want to disengage if recovered and off medication. I'm a long way from that though yet, so your definitely stuck with me... forever probably!! Haha! 😄
You're another that gives good advise Kendrew. How long have you been on the Forum ? Me only since 2019, but so glad you're all here for me with good sound advice. Sadly, recently I had to increase after getting down to 6.5mg. I was going so slowly too when a little PMR and GCA snuck back in....seems to have settled back down again now. So very slowly does it again.
Anne
Hi Anne. Thankyou so much for those kind words. I definitely don't put myself up in the same league as our regular and very knowledgeable advisors though. I've only actually been on the forum since 2019 too. I was diagnosed in the May of that year. I've learnt so much since then, and I think being an ex nurse has helped me understand a little better, some of the complexities of being a PMR/GCA sufferer. Without people like PMRpro, DL, Heron, SJ, Mrs. N etc, so many of us would be in total despair. We're so lucky. Just like one big happy family ❤
Absolutely agree 100%......what would we do without them. A letter has just popped through my letter box from my surgery requesting a repeat blood test in 4 weeks. This request has actually come from my Rheumy who asked my GP to keep a check on me. I know without that letter from my rheumy to GP I'd be left to my own devices. Bad really !! My creatinine is slightly raised, probably due to steroids, and I really must watch my HbA1C. Would hate to end up with diabetes.
Yes....developing diabetes is a concern for me too. I would prefer not to have to deal with that on top of everything else too. I feel I have to be in charge of initiating blood tests as GP hasn't much of a clue and although I'm seeing rheumatologist on Thurs, he's not requested any blood tests either! Without all the knowledge gleaned here I'd be totally compliant and in the dark about so many things. It's good to have all this knowledge at our fingertips as it enables us to speak up about our treatment and question responsibly the things we're not happy with.
Definitely, ask for your ESR/CRP to be checked and HbA1C too. We should all be given regular blood tests with being on steroids as they can do so much damage elsewhere in our bodies. My surgery must get so fed up with me as I have to ring quite a lot re my husband and now myself.....why do I feel so guilty when it's their job to help us. After all how many docs are actually seeing us face to face yet.....maybe never at all, which I reckon suits them to just make 'phone calls to us, which I received this morning. Hubby in so much pain from his hips, they both have to be replaced, but left side worse than right at the moment. GP prescribed morphine patches for him, but only 5mg. He has to wear one for a week and the second one in the box the following week. Really don't think 5mg will enough for the pain he's in. Goodness knows when he will get surgery with the list since Covid being so long. We always shared all the chores, but now everything down to me and I'm now feeling it....running around like a 'blue arse fly' He never slept all night last night and neither did I. Oh the joys of getting old eh!!
That sounds like such hard work on all counts and I really feel for you. These are changing times and the emphasis is really on us to be up to speed on our health issues at the moment.....otherwise it feels like we'll just get lost in the system. Your husband really seems to be suffering too at the moment so I hope he manages to get his pain under control. Chronic pain can be a real 'beast'.
I know what insomnia feels like too so I definitely understand how tired you must be. The positive thing though, is that things do and will improve given time. It sometimes seems a longvwait though.
Haha!.... yes the joys of getting old. We do get a free bus pass (if you can climb up on to the bus 😄)
Take care and hoping things begin to improve for you both very soon.
Thank you so much Kendrew....is that your real name, if so, so pretty. Hubby also coping with CKD (Chronic Kidney Disease) another issue suffering diabetes for the past 25 yrs. Morphine patches making him sleep (maybe I should put one on haha) All I keep thinking about today is my bed tonight....feel so very tired.
Kendrew is actually my mother's maiden name. My own name is Heather. My mother passed away very suddenly when I was 18 and my sister just 14. I used her maiden name as it just keeps a small bit of her alive. 🥰
Maybe get a glucometer to check your blood sugar whenever you want!
Completely agree.
Hi there. Yes, all those wonderful people, plus a few others are still giving there time to advise and reassure us with their invaluable knowledge and expertise. What would we do without them? Haha! Welcome back into the fold!
😀
I'm pleased to meet you - but not! Seeing that you are an 'old hand', I have no doubt at all that you'll do all the right things and taper very slowly until you achieve remission again. 🤞🏼
Hi……welcome back, or maybe not from your point of view!,
Hi sighthill, We’re still here 😉 sorry to hear about your reoccurrence 😣
We have a New Feature now called FAQ - which you might want to scan over when you’ve time. Some pretty up to date information & new info on Covid & Vaccinations to be added but there’s ‘Technical Difficulties’ at HU so l can’t get them added at the moment.
Kind Regards
MrsN
healthunlocked.com/pmrgcauk...
I’ve just looked at the FAQ - it looks invaluable. Thank you.
Hello, sorry you are back, what a blow! The key to your stage, 5 mgs, is slow and cautious and half mgs drops with at least 4 week gaps. If you don’t already, use DorsetLady’s taper programme described in the FAQs ( new innovation, initiated by Mrs Nails). One good thing is that side effects aren’t a big issue at your dose but you must keep a weather eye on your adrenal function. Maybe factor in a short Synacthen Test to ensure that your adrenals are capable of working again - especially having been suppressed twice. I really hope the next bit is smooth and permanent. It hadn’t quite done with you. I am well into my 5 th year - too demoralising to count anymore. We will help wherever we can.
Hi Jane, 5 yrs for you. Do you have type 2 diabetes due to the period you've been on Pred ? My Creatinine isn't brill at the moment and a slight raised HbA1C too. I'm unable to go for my usual walks to help lower BC due to Achilles Heel pain.
Such a shame for sighthill to have come out of remission. I love to read of people doing so well. A friend of mine informed me yesterday she's been diagnosed with Fibromyalgia. She and another friend of mine that's had it for yrs now are both in so much pain. Unfortunately, Pred isn't used for this disease so we're lucky, so to speak that Pred works for all of us.
Anne
Yes, Anne I agree! One of the things I read soon after I was diagnosed iwth PMR back in May 2017 was that if we have to get an autoimmune condition then get this one! Why? because the symptoms can be releived with steroids and it usually doesn't last for ever...........
Yes, absolutely Louisa....so we're lucky I guess. Not so lucky to get either of them though. But to get cancer is far worse.
It’s borderline as I understand it. Not on meds yet. We are fortunate to have a drug that works in spite of the side effects.
Welcome back, I’m new to all this but from my point of view it was good to hear that you have had success. Even though it’s a tough gig you know it can be done again. Was there any specific thing that triggered it this time around?
Nothing I can put my finger on. I had been blaming it on enforced inactivity during lockdown but when I check back my diary, I can see a slow progression of aches here & there & you end up thinking is it just old age? However blood test confirmed and one day on 20mg Prednisolone and I am a new man! No frozen shoulder, no sore ribs or legs. Happy meantime and will be tapering off very gradually into next year.
That's a good question from Lily-Gee as it could be of relevance to others here. Sorry to hear of your relapse and Kendrew struck the right tone. We'd all be lost and frustrated or depressed without the solid sound advice and support here. I'm a newbie and like Kendrew was fired up and keen to take control of the condition!!!! what a laugh. That was the hardest lesson to have to learn. You'll get there again because you know it's achievable.
Energy and motivation hasn't really returned after Pred
I stopped steroids rapidly and all PMR symptoms returned - HELP!
To the one who posted about excessive sweats..
A New Member to the GCA Club!
