Hi all,
I am struggling with everything today.
Have started the taper, won 40mg, and now on 35 I feel ok, few aches and pains but no swelling or excessive muscle pains but just feel like it's going to be such a long journey and that fills me with absolute dread. Trying to think 'one day at a time' but it's tough somedays.
I have also developed a rash of blisters up my arm, I have no idea if it's related or just something else my body wants to throw at me!!
The blisters do make me wonder about shingles, that would make you feel awful. Perhaps photograph them and send it to your GP. I hope it isn’t!Tapering can make you feel pretty knocked about. I wonder if a 2.5 mg drop( use a pill cutter) would have suited you better? You may find that paracetamol helps you. Hopefully this will pass in a couple of days. I used to get horrible sinking feelings. I needed distraction like a good film and to make no demands upon myself at all.
Are you using one of the slow tapering programmes recommended on the site? Don’t try another drop until everything settles. I am assuming that you have GCA on that dose. A return of those symptoms and I would consider going back up and trying a smaller drop when I felt better. Good luck!
I just looked you up and discovered that it is newly diagnosed PMR that you have suffered since February. I understand the bigger dose that is probably to deal with the build up of inflammation. You had a good response to Pred. It is a pity to spoil it now. You also seem to be going through the grieving process that many of us experience. - for our old life. This can make you feel pretty low. I am sure people will share their experience of it, if you want. I was ecstatic just to have a diagnosis and a miraculous drug - literally take up your bed and walk. I was also thankful that it wasn’t something much worse. With PMR there is a very good chance that it will burn itself out in time. Cut out the carbs and keep up with gentle exercise. Talk to us if you experience steroid side effects, most of them can be mitigated/treated.
You always give out such good advice and nice messages Jane and hope you are doing well. 40mg seems rather high for PMR, don't you think Jane? My CRP on diagnosis back in Dec 2019 I was running at 515, but still only started on 15mg, that worked brilliantly at getting rid of all the pain almost immediately. It wasn't until blasted GCA kicked in once I'd reached 8mg that I too was put up to 40mg. It's taken me quite sometime to reach my current 8mg by doing the recommended 'Dead Slow and Stop Method' I'm due next week to try the every day same dose of 7mg, but on DorsetLady, Sue's advice I'm going to take 7.5mg.....but not sure how long I should stay on that dose before I go to 7mg. Then maybe 6.5mg before trying 6mg. Hopefully, someone will answer this question for me. Like you Jane, I've suffered the odd day here and there from dreadful black moods and hope they disappear as I reduce even lower and also want to get rid of my chubby chops haha !!
Best wishes
Anne
I have heard of doctors prescribing high start doses for PMR a few times lately. I wonder if they think a big blast at the beginning will shorten the duration, it doesn’t seem to.I got stuck at 7 mgs for a year. I always went on symptoms. Something shifted and I got down to 6.5. Then when I got to 3 mgs GCA/LVV was diagnosed, so maybe my struggle was not typical. I am now on 10 mgs Pred and weekly Tocilizumab injections, bracing myself to lower the Pred. Good luck getting to 7,5. DorsetLady speaks a lot of sense.
Thanks for reply Jane, Yes, Sue does talk a lot of sense and ask her a lot about PMR, although she had GCA. In my opinion GCA is far worse due to the implication of possible blindness. I think I caught mine just I time. Hospital had no clue ! We all should educate ourselves on this awful disease. I panic due to only having the sight in one eye, as you know. I'm wondering whether once I reduce to 7.5 that I should stay on that dose for a month.
Anne
I would do everything gently and slowly, really listening to my body at every micro-step of the way. A month sounds about right to me, unless I was symptomatic. I will be right behind you.
Thanks again Jane, much appreciated and a month now on each mg I will do X
Morning Gypsysmum
Sorry you're feeling despondent. As Sheffieldjane says, it's a real grieving process for that previous life, one I struggled with hugely.
Remember that this situation won't be this way for ever. You will have good weeks to look forward to. Ask for help, family or even look at doing a course for chronic conditions - they are excellent. Look at your local IAPT for these.
Look for new opportunities that work in this new way of life. I swim instead of run now. Although feeling so much better after 18 months that I could consider starting running again - it is possible in time.
Keep well hydrated and pace, there will come point where this thing exists in the background instead of the forefront x
Hi coffeebeans. I am finding that I go through cycles of feeling positive, followed by lows. I already suffer from depression and nights are always the worst anyway so I think everything just piles on in those nighttime hours when your brain is allowed to roam.I
Yes, I do relate to what you're saying. Do seek some advice and support for this. We can't make it go away as much as we would like to be able to but there are techniques and tips to help.
The course I mentioned above is really good. I don't think it solves anything but if you can chip away a little at the things that cause problems, the overall picture is better. It's difficult I know x
Hello.I do remember well that feeling near 3 months in after the flurry of new treatment and resolution of symptoms. I felt very ‘preddy’ with an odd balloon like tension in my body, nothing felt like me any more and poor sleep just made the stuffed head feeling worse. It was then that I knew this was the new status quo for a very long time and nothing in my life before was the case now. The forum showed me it would pass and not to reduce too fast just to make the distress stop. It could also be quite scary when I felt ill again due to withdrawal symptoms, even at that high dose level. Also, going on a low carb low salt diet was the best thing ever because it helped me keep control on something and I avoided weight gain with all the other health issues associated with it. Sometimes that felt too much when I couldn’t treat myself either but I held on to the goal in my head. It is so worth doing. 40mg is jolly high for PMR and for so long, so I’m sorry you’ve had to go through it and yes, one day at a time and yes, there are days when one thinks it’s forever.
As SJ suggests, it might be shingles on that arm. Have you been in the sun? Pred makes one very prone to sun damage.
I have no idea why my dr started me on 40mg I was just so glad to be symptom-free as I had been in pain for two months before changing GP.Luckily I have not had insomnia with the pred, in fact, I am sleeping really well but I think that is me catching up with the sleep I wasn't having before when even just lying hurt.
I am thinking it isn't shingles. I still have one blister this morning, will keep an eye on it, no other symptoms and for the life of me, can't see that I have burnt myself. Haven't been in the sun either. ( Oh how I miss my greek holidays!!)
Hi,
I think that feeling of despondency is absolutely normal early days, and starting on such a high dose of steroids probably hasn’t helped.
Yes it can be a long journey, but once you have your condition under control it hopefully will be a more comfortable one, certainly physically, and the sooner you can come to accept it won’t be gone in a matter of months the better you will cope with it mentally.
As others said in reply to your first post, learn as much as you can about your illness, it’s not so terrifying then - and talk to us, we’ve all been there....you might like to read this as well-
healthunlocked.com/pmrgcauk...
...and please get the blisters checked out, if it’s shingles as suggested by SheffieldJane it needs addressing.
I think for me the biggest change has been going from a full-time high-stress manager's job to this, and the tiredness, grumpiness, and just everything is hard work that is driving me crazy. I am fiercely independent and my husband has been amazing but he hasn't got the same eye for cleaning detail as I have.. and it really annoys me.. lol. I know its a small thing but when you are unable to change it, it's infuriating!I am going to call the dr today Re the blisters and see what they suggest.
Feeling low, despondent and that it will never end is something that many of us have felt. But it does get better, albeit slowly. Be kind to yourself as best you can. See if there’s something that you can do, read, watch that gives you some joy and can lift your spirits in amongst these physical conditions that cause you pain and concern. I too remember being quite depressed at the beginning of this illness, feeling that I was losing my old self but it’s mostly come back. Patience was never one of my strong points but that’s one lesson I’ve learned with PMR. It will not be hurried along. There is always help and knowledge on this forum and that can be so supportive and reassuring. As Dorset Lady said, read about your illness, it will take away some of the fear and in itself be reassuring. Take care x
The one certain thing about PMR and pred is that, for almost everyone. they will be able to look back in a year and see how far they have come. No-one ever believes me at the time when I say it but many will come back and admit it was right enough. It sounds a long time - but it isn't really,
Totally right. I agree.
If I am honest, even the past three weeks has been a marked improvement from the 2 months before. I can dress myself and pick a cup up, small things but yes you are right, focus on the small achievements.
Yes can totally understand and clearly remember those overwhelming feelings of absolute dread. Without doubt, it is a hard journey but things can and do move on. I was so healthy, skiing twice a year, abseiling and rock climbing and then in late 2018 gca hit me and high doses of prednisolone with such horrendous side effects. Tocilizamab added with even more life changing effect but here I am in 2021 off both of those medications and recent blood test showed all seems good and I am am feeling so much better. I do remember back then finding this site and PMRpro responded to my message (thank you so much PMRpro) where I had said I was feeling really desperate and despondent and in dread of what might be and true to her words at that time, you just need to accept just now and look after yourself and accept what is while remembering it wont always be this way. Really hope you feel better soon.
Have you had a bad time with tocilizumab?
Overall it was great in that it really did make a difference to how I was feeling at that time, such as having such horrendous severe headaches and literally could not even tolerate lightly brushing my hair (which I lost such a lot on this journey) but within a couple of weeks of starting the weekly injections, I had severe difficulty in breathing and now have bilateral pulmonary embolism and have been told its very likely down to the tocilizumab and in turn has caused scarring on my lungs and will need to be on apixaban for the rest of my life. In honesty, not great but for some bizarre reason easier to cope with than the awful severe headaches I had at the time. Again, thanks so much, your message back then really did help.
Is it affecting your breathing? I don't find the anticoag future thought too bad - need it for atrial fibrillation but the a/f bits still are inconvenient when they decide to turn up to play just as dinner needs to be cooked!!!
Thanks, but not understanding your message here?
I'm asking if the PE has left traces, which fundamentally means, has the TCZ left its mark. And it sounded as if you found the thought of anti-coags for life daunting in some way,
I think more so the effects of the scarring on my lungs which is apparently a result of the bilateral PE caused by the TCZ is the more daunting factor, in that I continue to have difficulty in breathing with exertion of any kind and the apixaban most definitely helps with that. The thought of having the difficulty in breathing for life is more the daunting factor for me and not anti-coags
I get breathless if I try to walk a bit faster - is it the PMR (happened originally 16 years ago when it first appeared), is it the atrial fibrillation (most likely caused by the a/i part of PMR), is it the medication for the a/fib which suppresses both BP and pulse rate which doesn't rise in response to exercise? Or is it just age? I can't say I'm impressed ...
Thanks, and no not impressed either but I guess having had to make so many lifestyle changes, as I now know so many others have had to do the same, Im just accepting what and is and learning to be so grateful for what I do still have which is so much better that what I had in 2018.
Nothing to add to the excellent advice but I stress that you should get to the drs immediately because if it is shingles they can prescribe anti virals but they have to be given in the first couple days.
Oh, I didn't know that, will give them a call now. Thank you.
so so sorry you are feeling so low. but I certainly get it! Newly diagnosed and starting can be overwhelming and I see you are young which I think makes it all the harder!! I have a Relaxation and yoga link posted on my profile .. and will post here. I hope it will help. Take time for yourself... gently! good luck. you will find a wealth of information on this site..I dont know WHAT I would have done without it!! the last track is the best to relax!!
sites.google.com/a/apps.hop...
Oh perfect, thats sounds right up my alley. I do guided meditation and that helps me a lot to relax. Thank you for sharing this.
It is me (I) on the link.... hope you dont mind an American accent!
Absolutely not, my best friend is from America!
Some days you just have to give yourself a break and have a duvet day and watch a film. You are probably tired so a nap can't hurt. Hope you are more hopeful tomorrow.
If you are feeling a little 'sorry' for yourself today read this the story of one very brave woman !!
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