Greetings to All here - Veterans, Newbies, Men, Women, Young, Not-so-young, Confused.coms and 'Aunties' alike
As I write this, I'm very aware that, for some PMR / GCA sufferers, this horrible Auto Immune condition might never abate, let alone burn-out. And, yes, PMR / GCA is Life Changing - whether in the short (at best, 2-ish years?), mild, severe, long term or permanently. And so, I write less from a sense of celebrating / appearing to brag about my good fortune: more to share my recent experience with any or all who might be at a similar stage on their PMR /GCA Journey and clinging-on to some Hope that 'things will, or can get better'. No guarantees, but here goes:
I posted recently about a sudden (literally, within 24 hours), dramatic and very positive reversal of my PMR symptoms after struggling to reduce the Preds below 6mgpd for 6 months without continuing pain, stiffness and DF (Deathly Fatigue) - then 'upping' the dosage to 7.5 mgpd for a couple of weeks, but with adverse effects (usual PMR symptoms + nausea, dizziness, you name it!) - then taking the adventurous (well, ok, I thought 'S*D it') step of experimenting with an overnight dropping of the Pred dosage to 5 mgpd (far more than the usually recommended 10% of previous) to test-to-destruction the cause of my dilemma around the often confusing PMR symptoms / steroid reduction side-effects.
Result? An astonishing and continuing return to my usual Action Man / Business as Usual self, an absence of almost all of the symptoms and a return to 'Normal' energy-wise, both mentally and physically - despite being 2 years older than at the onset of PMR. Phe... !
Sincere thanks to all here who responded to my last post, your replies were incredibly helpful. At the same time, I wrote to my trusted local Rheumy with a synopsis of the above, and asking for his opinion as to my reducing dilemma. I've just received his reply and will paraphrase it to save time...
..."Mr Benjamin, you have now completed 2 years of steroid treatment... PMR is a self-limiting illness which dies-out in the vast majority of patients within 2-3 years... in your situation, I would now recommend a reduction of 1 mgpd each month... if this proves difficult in terms of relapse-related symptoms, then I would suggest a slower plan of 1 mgpd every 2 months, but NOT any slower... now B****r off and don't bother me again". (N.B. I made-up the last bit just to keep YOU LOT on your toes ).
So, my conclusion(s)?
1. Yes, at age 58 I was relatively young to 'catch' PMR 2 years ago.
2. As a male, I'm in also a relative minority of PMR patients (although my Rheumy suggests otherwise..). Either way, I consider myself incredibly fortunate to be (hopefully) reaching the end of a long, dark, painful, debilitating and often depressing (yes, depressing) and scary tunnel health-wise.
3. (As some research studies suggest?) PMR / GCA can be triggered by viral / bacterial infections and other genetic / environmental factors (e.g. nationality and / or pre-disposition to Stress), and / or as the ageing process.
4. The 'best case' in the possible remission of PMR, in my case at least, seems to fit a predictable pattern - if (and a big IF..) it continues. Aiming for 'Pred Club Zero' in 4 months: but, as always, we'll see.
5. With PMR / GCA, and the probable underlying AI (Auto-Immune?) vulnerabilities that can trigger it, you / we will will always have a potential 'weakness' - and so make the most of feeling well / better in the meantime, or even if feeling 'out of the woods'?
6. Try to make the most of every day, regardless of your battle with PMR / GCA. There are so many other, more serious tragedies that can beset even the most careful, healthy and well-intentioned of us. Some of the terrible and tragic events in the National and International News recently might put our PMR / GCA troubles into perspective... ?
7. For better or worse, Life can sometimes throw us a 'curved-ball' - and, sometimes Life events don't, and will never make rational sense. But, this is Life, for all of its twists and turns.
8. It's often said that Coping is the Key to survival in adversity. Hope, laughter and good friends / N&D are key to this, and YOU LOT are part of the equation too. Don't forget to support each other - at the same time as comparing notes / debating the facts / issues.
That's it PMR / GCA Amigos, hope this is useful to some of YOU LOT at least. Try to keep smiling in the meantime, and, if you think this is the last you will hear from me you are seriously mistaken. Be warned...
Back soon, happy days
MB
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markbenjamin57
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Great post and so happy for you MB. Makes me wonder if the prednisone was the culprit at this point? I mean a drop from 7.5 to 5 and feeling normal is amazing! Like you, I feel like I too was a minority. I was 52 when I met PMR and of Italian decent. Perfect health, then a twist of an ankle changed my life. Go figure.....
Greetings from across the pond, good to hear from you!
Well, who knows re. the symptoms 'culprit' dilemma? My money's on the Preds recently. That said (and as the experts here say), it's a compromise either way.
Let's see? Hope you're getting on ok, will be good to hear your news too.
Best wishes, stay in touch. Love the expression 'Go figure'. Only the Americans could come up with such a succinct phrase!
Lol, my brother has been living in the UK for over 15 years. Whenever I visit across the pond, my nieces and my nephew tease me about my funny accent and the fact that pants are underwear!!!
Also I forgot to mention how important it is for everyone that is suffering to see that there is an end to PMR/GCA. Before I found this forum I spent hours upon hours looking for anyone who had good news or was in remission or even cured but never did. I think all the other sites added to my depression! With that said, thank you Mark for giving us all hope.
Yep again Maria. I'm not particularly religious or spiritual, but I'm a great believer in the value of Hope and optimism in the process of at least coping with the tough bits in life.
It reminds me of an old quotation (forgot from whom, but it was an English author, I think): "England and America - two countries separated by a common language".
Oh, bless you Jane, thank you so much for your lovely thoughts
The strange thing is, despite feeling my 'normal' (whatever that is!) self again, and so suddenly, I can't let-go of, or ever say good-bye to all in this great and supportive community.
So, now for the bad news: I WILL BE BACK with some more Mirth soon for YOU LOT who've also kept me going during the tough bits. Much material stored...
Margaret, I am in the same place as you, 5 years in and it seems 'stuck' on the 6/7 mg level.
I'm just wondering if anyone has tried or knows someone who has tried marijuana as a supplement to Pred? I guess it's only a matter of time before it becomes legal for medicinal and "recreational" use anyway. I do know people who have used it for other cronic illnesses with some positive results.
Hi ventdunord, I tried a smoke only once and that was 2 puffs only, was on sofa all day sick and dizzy !!! Never again !!! Yet I love the smell of it, strange.
I also have heard for MS sufferers it does the job !!!!
Don't think my body has heard of Adrenaline glands anymore lol lol at least going back up that half mg I feel a lot better.
Next week going to try 7 again and live on hope lol
However I haven't used cannabis resin since my early 20's when we melted chocolate and put small lumps of CR inside. I also remember way back when there was a cough medicine called 'tincture of cannabis ' . The kids at school used to dip cigarettes in it and smoke them once they had dried out. Strange how these memories resurface.
Good luck with the reduction program. I'm starting again on 6 /7 alternate days, probably for the fourth or fifth time.
I use cannabis (California, USA -- medical use legal for years, recreational just approved by voters) but I do not rely on it for PMR symptoms which would indicate rather a need for Pred adjustment. However, since NSAIDS are contraindicated with Pred, and I prefer not to take Tylenol (paracetamol) because of its liver implications, I take cannabis for occasional other pain, with good results, and for general well-being. I use non-psychoactive tinctures (high-CBD products) as I haven't the time nor the inclination to get stoned. Actually, I guess I do have the time, since rest is such a big part of PMR protocol, but I'm still disinclined to get high. I have not heard of any contraindications of cannabis use with PMR nor with Pred. Helps with sleep too if you find the right product.
Hi cc, thanks for the interesting post. I remember in my youth making s**t cookies with melted Cadbury's chocolate and laughing uncontrollably whilst watching a Tom & Gerry cartoons.
Unfortunately here in the U.K. our gov still holds Victorian attitudes towards Cannabis use, but doesn't seem to worry too much about tobacco & alcohol abuse.
Thanks for another very encouraging post Mark - for all of us it is always great to hear about the light at the end of the proverbial 'tunnel' ! i really like the bit about feeling 'mentally' more normal - but maybe THAT (for me anyway) might be asking tooo much !!
Anyway hope you continue to chip in occasionally with your unique perspectives on being a 'recovered' PMR-er !
What lovely news for you markbenjamin57. With your stoicical efforts to keep us all feeling positive about this debilitating illness you really deserve some personal good news. I think I speak for many of us that hearing about others who are feeling better is really encouraging and not in the least disheartening. I hope it continues for you and if you do reach the end of the tunnel please stay a little longer to keep us all giggling.
Many thanks Brixhamhampster, I feel truly fortunate to have got this far, so (relatively) quickly. But to keep the Aunties happy, I won't push things as I well-know PMR can come back to bite you in the ... :-/.
As for my continuing to hang out with YOU LOT, all I can say is 'be careful what you wish for'...
So happy to hear that you are feeling so much better! I think we all hope to one day reach a time when the pain and fatigue is behind us...even a day or two of feeling well is appreciated. I hear in your story the receding of the inflammation, but also feeling better with less prednisone. Thank you for sharing..enjoy the summer😊
Sincere thanks, and I just wish I could share the FGF (Feel-Good Factor) with my many friends here. With a long-term illness like PMR / GCA, you can forget how it feels to be 'normal' (whatever that is!).
And yes, for me at least, Less is More as far as the Preds are going - for the moment at least, and in my context.
Well Mark, that is good news. Am really pleased for you, although I have to say I was a little surprised! Seems with PMR, there aren't really any rules- it just does what it likes, so whatever works for you then go with it.
I got to 4.5 daily, but, following advice from my friends at our Coventry meet up last week, I upped my dose to 5mg again, and that has had really good results. Minding Dorsetlady's comments about problems at this level, I will now stay put for a few weeks. Think I got over optimistic about tapering to 4.5mg, and got a bit caught out!
Yes, such a sudden and dramatic improvement was / is still a surprise to me too - esp after doing the opposite of Best Advice (which I endorse) re. tapering! As Marie said: 'Go figure...?'
I agree with you, and I'm sure the experts / Aunties here will too: PMR (in particular) seems to have a mind of its own, and (in my case at least) the symptoms can subside as quickly as they hit you.
I'm sure you're right in being cautious at 4.5 mgpd. I was / am probably the exception that proves the Rule with Pred reduction - maybe due to my context? So, hang-on in there and keep positive about the last bit (hopefully for you) of the PMR / Pred trajectory.
And, of course, 'Man' PMR is far worse than any other kind. That said, I'll get back to hiding behind the sofa in anticipation of a Pincer Movement reprisal from the Aunties here
Will keep you all posted, for better or worse... thanks again and keep smiling.
Oh so lovely to have an upbeat post. It makes me feel so much better. I'm delighted that you seem to be emerging from the PMR tunnel and I wish you all the very best with your continued recovery. Sue
Yes, I'm watching / listening to Ade and Ren / (Des) carefully but, as the Boss around here, I think we've worked things out between us. Or, maybe THEY are the real Boss...?
Well as others have already said - there are no fixed rules are there! So pleased for you that you are feeling so much better and you can see light at the end of the tunnel. Know that you will keep us informed and your posts will continue to help us all feel more positive and upbeat. Yes agree that that it's not so much what happens but our reaction and approach to it but again all part of a learning experience and hopefully we can all support and encourage each other on the journey, no matter how bumpy that is!
Thanks Jackie, all I can say is a big PHEWWWW... about feeling so much better!
And, Yep, I don't intend to let-up on my relentless, Bonkers assaults on the Chuckle Muscles of YOU LOT - who, in turn, have spurred me on so often during my PMR Journey too. Are you all Masochists, or what?
As you say, support and encouragement are so important in the process..
look forward to you joining Club Zero. But don't rush headlong into reducing, otherwise the "aunties" will be shaking their heads at you. And you know, you don't want that!
Always good to hear great news Mark! It's encouraging and gives us all hope. Really very happy to hear you will stick around and write more tales to keep us uplifted. Laughter is so good for us all. Blessings Mark.
Many thanks - to be honest, the novelty still hasn't worn off yet!
Yes, I think hope and optimism / confidence in one's self / the future are just a couple of the casualties of chronic, debilitating illnesses like PMR (and especially GCA). Many times on the Journey, I've thought 'is this is how things will be for ever?', especially during bouts of DF (deathly fatigue). Fortunately, PMR seems to have proved me wrong - for now, at least. As always, we'll see...
Yep, much more Bonkers 'material' stored up, and making progress with the book of random nonsense that YOU LOT keep encouraging me to publish. As usual, haven't you all got better things to do?! (only joking..)
Hope you're making progress too Jan, try to stay positive and hang-on in there.
I managed to put the right message on the wrong forum...........please put it down to 'Sliver Surfer.. memory lapse. Must try to do better as the school teachers used to write in reports, many moons ago.
So happy for you!!!enjoy the positive feedback.This site is great,we have nothing in the US. I have learned so much and are more knowledgeable when I go to my Doctor.
There has been attempt to set a forum up in the US but it hadn't taken off. It does need a critical mass before it really gets going. Not sure what the status is at present.
This only exists because 5 ladies met on the patient.info forum which was the first PMRGCA forum in the UK. They eventually set up the northeast of England charity, there was already a Scottish one. Later that group set up a forum. Then the national PMRGCAUK charity was formed - and they set up this forum.
Let me know if we can get something going in the states.I am very lucky to have a Doctor that diagnosed it Immediately and following the way you do things...very slowly 😊
From what you say, there's a less effective internet social / health community in the US than in the UK / Europe. That's a real surprise to me, given the proliferation of internet communities out there!
Either way, 'we' (i.e. those of us in the UK / Mainland Europe) seem to have some very sound research data and methodologies behind us in the context of understanding and managing PMR / GCA, Steroid tapering processes etc. - and a great channel for communicating / sharing experiences about all things related.
Over to our local 'Aunties' and originators of the UK PMR / GCA HU forum maybe...?!
As I say - it was tried. A basic problem is the lack of long term patients with the requisite background knowledge at all levels. And before you ask - no, the aunties haven't space for another! Do you have any idea how long I spend on PMRGCA stuff on 3 forums? I read every single post...
You deserve a medal for your combination of dedication, expert knowledge, straight-talking (in the best possible way!) and reliability for others on this forum.
I'm certain that's what we all appreciate about you being here.
Still a way to go for me, but this post of yours is SO encouraging, markbenjamin57. Maybe gives 'permission' to try the occasional swifter reduction - and sometimes it works.
Well, the main aim was to share my experience and ask the trusted experts here for their opinion as well as [xxx bragging about it xxx] cautiously celebrating - for now anyway But that's in my own context...
I think the best / safest advice for everyone who's tapering the Preds is always to stick to the 'slow / gentle' methods just in case. And, as a few of YOU LOT report here, you can still get problems at as low a dosage as 1-2 mgpd Pred - and even when a member of the elusive Club Zero. So I'm not assuming that I'm out of the woods yet...!
I'm not qualified to give advice but in my case, yes, a quick hike from 6-ish to 7.5 (but feeling worse), then an adventurous (30-ish %) sudden 's*d it, let's see' drop to 5.0 in the Preds seemed to do the trick after 6 months or so 'stuck' at 6-ish. Since my last post, now at my Rheumy's recommended 4 mgpd and still feeling relatively good compared with much of the past 2 years.
Then again, maybe my PMR had just decided to give me a break - either for now or permanently..? Either way, the improvement in all symptoms was dramatic and almost overnight. Strange, or what?!
As you say, maybe you could try a slightly more adventurous / faster reduction - but I suggest you check things out with your GP and / or the Aunties here before you do it? Everyone's context is different, so best to err-on the safe side.
Good news Mark, well done, stay well. I'm still strugglin' on 3, and my adrenals still haven't kicked in, but I'm hanging in there. Summer's here, might try a Pim's. PS
Many thanks PS, I'll try to. Although not quite 100% yet, the recent improvement has been dramatic, and hopefully lasting. Now 4mgpd and counting..... but not too fast.
Yes, it seems that people can still struggle with Pred reductions even at relatively small doses like yours (or even after reaching club zero). I think it's just a matter of being patient and pacing yourself, either way. Even the 'best case' couple of years of PMR does take it out of you, and it takes time to get back to your 'normal' level of fitness (whatever normal is?). And, of course, clock of life is ticking in the meantime...
Thanks for this, MB, - so glad you're doing well and hope it continues. Carpe diem!
My 'journey' has been complicated by spinal surgery and who knows which side effect is a result of the spinal stenosis, the surgery, prednisolone or indeed anything else (including the 'age' word). The only thing to do is KB*O as a friend said to me ...
Mark, I'm so glad you're doing well!!! And... I love your posts. I agree, go with the flow and appreciate every little thing in life. You are so right, there are so many other more devastating disease. I feel like PMR has given me the permission to "stop and smell the roses" and made me appreciate the positives in my life. Thank you for such a neat post.
Well, so far, so good now I've dropped again in one 'hit' from 5 to 4 mgpd pred (as recommended by my Rheumy in my context, and not exactly following the DSNS approach!). A little 'kickback' symptoms-wise (mainly slight fatigue), but nothing as bad as in the past. I'm cautiously optimistic...
I agree, PMR does make you change your priorities and hopefully learn to appreciate what you have / can do, rather than have lost / can't do in Life.
So it's On, and Forwards - and more posts / the much encouraged 'funny' (allegedly) book well-on the way to publication soon. (But that's TOP SECRET - don't tell anyone yet....)
Best wishes from the UK, hope you're getting on ok too.
Yes, I'm doing so much better than a year ago in March when the whole ordeal started. Got along very well with my doctors until they recommended earlier this Spring a 3 mg Pred reduction (from 10 to 7), that's when I bulked and followed the forum's advice. I stayed at 8 mg for about 2 months and now I'm down to 7.5 and have been feeling fine. Thanks for asking. As you say On and Forward. Garine
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Light at the end of the tunnel
Light at the end of a long tunnel
GCA little light at the end of the tunnel !
Something to look forward to. Light at the end of the tunnel
The journey on the other side of PMR/pred?
