I am back down to, and hovering, at 6.5mg Prednisolone, over the past few days have developed a nasty niggling pain deep in the left side of my neck and shoulder. This pain is the same pain I hade when first diagnosed with PMR and is in one of the original places.
My question is;- if PMR was caused by over reacting Adrenal Gland which Pred shut down, is it likely that my Adrenal Gland is waking up at 6.5mg Pred and therefore causing this pain again?
If so, this PMR seems to be a vicious circle that there is no getting out of.
My GP would like to get me off Pred all together but is not pushing and is happy for me to manage it.
At the first consultation with my Rheumatologist in March this year, he said he would eventually get me off Pred with the use of Methotrexate, without giving a timeline.
I have a further consultation booked for early January and suspect I will be telling him that I am still on 6.5mg Pred.
I am reluctant to go back up to 10mg Pred for the 3rd time, but if this pain persists, I have a feeling that is what I need to do, and am anticipating that is the advice you very helpful "PMR Friends" are going to give?
If so, for how long should I tollerate this pain to give 6.5mg a chance to work?
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Your adrenals glands should be thinking about working again - this link explains - but there is no reason why that in itself should cause a flare - if that's what you think the shoulder/neck pain is ...
But I would question why you have needed to go back to 10mg twice before - too fast a taper? or something else.?
Sounds as if you and your rheumy are in too much of a rush to get off the Pred... you will get off the drug, but only when your PMR goes into remission, not before... and that can be a lot longer than people may think or like.
If you think it is a flare - this contains advice to deal with it - and if you follow it then drop back to 7mg not 6.5mg -
Of course it may not be a flare- have you done anything that could account for issues - been in a draught, different pillow, been overambitious with that arm ?
there's no point in getting off the pred if you still have issues. Try and work out if they are PMR related or other cause. Methotrexate is not a replacement for pred if you still have inflammation.
Sorry if I did not explain very well. I did not mean to suggest that either my GP or Rheumatologist are pushing me to get off Pred asap, they both seem to understand PMR and it's side effects, as well as the long term side effects of Prednisolone, and they are both working with me, rather than telling me what I have to do.
It is probably me that is at fault impatiently trying to get off Prednisolone sooner rather than later!!!!.
I have read numerous posts on this Forum where people do not have a working relationship with their GP and may not have managed to see a Rheumatologist, In this respect I think I am very lucky.
About a year ago I rasied a question on this Forum as to why I needed to see a Rheumatologist. I was lucky enough to get an NHS appontment with a Harley Street Specialist and realised that he was approaching the same problem from a different angle. I do not mind which one of them sorts out my PMR as long as one of them does.
I think my original post was really a long winded way of asking for a little bit of advice please.
How long should I stick at 6.5mg with a pain that I have each morning and eases through the day, before going back up again?
Has the pain you describe only started since you got to 6.5mg? If so, and it’s only few days then return to 7mg smartish and see if that resolves it. If it does then good and suggest you stay at 7mg for a month or so before thinking about reducing again.
If you’ve had the pain longer than a couple of weeks or the return to 7mg doesn’t work after 5-6 days then you probably need to follow the flare advice -and again back down to 7mg
Does that make sense? Hope so, I’ll take my headmistress’s hat off now.. 😂🤣 sorry if it came across as such .
I would like to interject. I have been on this site for 2 years. Everyone is in the dark about PMR, and Prednisone and the separate effects it has on the recovery OF THE ADRENALS.
WHY IS THERE SO MUCH CONFUSION...? WHY DON'T DOCTORS KNOW HOW TO GUIDE AND PRESCRIBE..? WHY IS THIS DISEASE SUCH A MISTRY AND WHY IS IT NOT TALKED ABOUT IN THE MEDIA? WE ARE ALL SO CONFUSED...AND SCARED OF LONG TERM PREDNISONE USE INCLUDING ME.
This disease seems to have symptoms exactly like Multiple Sclerosis. When I tapered down from 20mg to 3 slowly in 2 years, suddenly, I could not walk, I could not get up from a chair, I could not turn over in bed, I could not function. I was devastated.
Can this disease get some proper attention? Doctors are clueless! Friends and family are puzzled and patients are scared. No one knows what to do! HELP!
It may have symptoms similar to MS - and actually several other disorders. What it DOESN'T have is any signs that can be identified with imaging except the position of inflammation in soft tisses to be found by PET-CT prior to management with steroids.
It IS talked about in the media - the charity has members who do such articles and interviews and there have been considerable improvements in the last 15 years since I became involved with the charity.
YOU may be in the dark - we have explained how being on corticosteroids affects the function of the adrenal glands, it isn't any particular secret and and simple pathological physiology. PMR has no effect on it.
I really don't know more we can do in the information stakes - we are here and providing that information in a format that non-medical persons can understand. We are here every day - and maybe if everyone else was and reading all the information we disseminate, they would get the message too. Have YOU read all the FAQs?
There does seem to be more known about PMR [and GCA to a lesser degree] in the UK and parts of Europe than in the United States .. not sure why, they have centres of excellence as do other countries.
Although I think we’d all agree there does need to be more knowledge in certain parts of the medical community.
The PMRGCAuk charity does all it can to promote knowledge of both illnesses - but it is a small charity and doesn’t have the resources many bigger organisations do. Although it’s UK based, anyone from any country can become a member and get more information.
This forum also has lots of information, and yes new patients may be initially be in the dark [as was I when initially diagnosed with GCA 11 year ago] but they soon learn if they spend time on here, asking questions or just reading posts/replies and looking through the FAQs they learn a lot about their illnesses and treatment.
It took me 18 months to get diagnosed mainly due to my GP’s lack of knowledge about GCA - and veering off in a wrong direction with treatment- resulting in the loss of sight in one eye. So once diagnosed I took it upon myself to find out as much as I could about my illness…and unfortunately 11 years in that still seems to be the scenario in many places.
Much as we would like to we may not be able to educate the doctors, so we have to educate ourselves.
As this has come up on my Forum Post I would like to add my comments on your rant that indicates you are having a rough time at the moment, which I empathise with.
There are a lot of us, including me, who had never heard of PMR until we were diagnosed with it. Yes it, (plus side affects) is nasty, Yes there is still a lot to be learnt about it, and hopefully researchers will come up with a cure one day, Yes it is difficult to get friends and family to understand PMR, and in my case to even accept it is a genuine illness. Yes, as we do not understand what the future holds for us it can be scary. Yes we all need help.
This Forum provides HELP and HOPE. The Volunteers and all contributers are HELPING me to understand what I am dealing with and how best to go about it. I suspect that some have medical knowledge but they are not claiming to be GPs or Consultants.
I think your request for the disease getting propper attention needs to be directed to the health authorities and we would all back you on that
I am so sorry my post was taken as a rant. I am not a ranting person. I think the caps had to do with the interpretation. It is the risk of text. The tone and intent can not be accurately interpreted. I did not for a minute intend for it to be received that way. So many people are so confused about just about everything to do with adrenals, tapering, etc.. and so many are frightened even though this Web site is relaying great info and advise.
I appreciate the authors of the info given here and my post was not directed at them but at "how do we deal with this awful disease".
No apology necessary, we are all in this together, PMR is very debilitating.
In our darkest moments I am sure we all feel and wish for what you are asking. That is why I for one. am so grateful that we have this Forum offering help and advice
Are you a member of PMRGCAuk? If not I’d urge you and anyone else reading this to join. The more members we have, the more money available to hopefully fund research and/or more publicity
That's quite a RANT there LP. there's no need to shout especially at the wrong people. If you read the info available you won't be in the dark anymore. Very few people on here knew what PMR or GCA were before they contracted it. We all wish it were better publicised and if you feel that strongly I suggest you go about doing so. We would all be very grateful but take care to read up and fully inform yourself prior to launching on the media. It behoves anyone taking issue to understand their subject less they look silly when questioned. All the best and hope you feel better soon.
The adrenal problem is separate from your PMR. The supportive treatment for the PMR, Pred, just happens to shut down the adrenal glands as a side effect. This is because your natural cortisol (a steroid) isn’t needed while the body is flooded by the much more potent and higher doses of the artificial steroid, Pred. When you get under 10mg somewhere your adrenal glands need to start making their own Cortisol to make up for what Pred is no longer supplying. Since the glands have shut down they sometimes don’t activate as quickly and the body sometimes needs time to realise it has to start.
When your adrenal glands start to work, you shouldn’t feel anything. It’s the lack of fatigue and the wobbles that tells you things are working. Low cortisol occurs when there isn’t enough cortisol and not enough Pred anymore to make up for it. This can cause deep tiredness, weakness and a fluey achey feeling amongst others. Pain in specific places is not due to this but something else such as PMR.
I don’t really understand your second paragraph where you say” If PMR was caused by over-reacting Adrenal gland which Pred shut down.Is it likely that my Adrenal gland is waking up again at 6.5 mgs and therefore causing this pain?”
The Adrenal system is not a causal factor for PMR as far as I know. Your Adrenals beginning to work again is not the cause of an old original pain, returning. What is, is dropping down below your optimum dose of Pred which has been dealing with this patch of inflammation and there is no longer sufficient in your system to do this.
That pain is so particular that it needs investigating - an X Ray? It may not be a PMR pain at all, maybe it is coincidental that it was there at the beginning of your PMR and has been masked since then. Just my thoughts. Good luck. PMR refuses to be hurried.
"if PMR was caused by over reacting Adrenal Gland"
That is NOT what causes PMR, nothing to do with the adrenal gland.
"he said he would eventually get me off Pred with the use of Methotrexate, without giving a timeline."
HE won't "get you off pred" and there are no guarantees that MTX will improve the record either - eventually the underlying autoimmune condition that causes the inflammation will burn out and go into remission. All on its own, whether you are on MTX or not for most. A very small cohort of patients do very well on it but by no means all.
Have your 2 previous returns to 10mg been after a flare at about 7mg or just under?
You are never reducing relentlessly to zero, you are tapering slowly to titrate the dose to find the lowest effective dose for YOU at any given time. When your body rebels at a similar dose more than once it is usually a sign that you have reached your destination for now - it doesn't mean you won't get lower, just not yet. If you do get a return of symptoms after a reduction step - don't hang around too long before going back up - the longer you wait, the more there is to sort out. Do the flare management of adding 5mg for a few days, as long as it takes, and then back to the last dose you were good at. Give it a month or two - especially since this is the 3rd time - and try 1.2mg very carefully and react promptly when it doesn't work well. Never bluff with PMR - it always wins!!
Thought so - that really is a sign that is "your dose" for now. You will get lower later but if you try to "push through" now, you wil end up back at 10mg yet again and every time you yoyo it gets harder the next time.
OK Ladies, thank you very much for your interest and replies.
I hold my hands up now - I am not a medical person, do not associate with medical people and keep away from Medical Centres and Hospitals as much as possible. I have nothing agaist the people who I greatly admire, but have a bit of a phobia about the buildings. Years ago I passed out when visiting my sister in hospital who was having wisdom tooth removed, they just left me on the floor until end of visiting time and then took me home.
I am a logical person, but on this occassion my logic was obviously wrong.
My reasoning being that if Prednisolone stopped the PMR pain immediately, which thankfully it did, and in the process my Adrenal Glands were shut down, which appartently they were, then it must have been the Adrenals causing PMR - back to the drawing board I guess and a lot more reading of posts on this Forum
I will return to 7mg tommorow and see how it goes.
I’m also struggling at 6.5mg, having failed to get down to 6mg without feeling the effects of adrenal recovery or lack of it. And the old injuries and pains that predated PMR and have been added to over the seven years of pred have come back with a vengeance, so it could well be the repetitive strain injuries of golf before and during your PMR.
The shoulder and neck pain seem to be under control and easing at 6.5mg Pred so decided to stay at this level for at least 4 weeks and then see how it goes before tapering to 6mg
As this takes me up to Christmas, New Year and then trip to Australia mid January, I suspect I will be at that level until the end of February, fingers crossed !!!! I had a big flare in Australia earlier this year
In the mean time, the pain in my right hand is with me all of the time day and night and Prednisolone does not seem to affect it.
I put this down to being right handed so anything I do, such as pruning, raking, sweeping, opening bottles and cans etc. hurts with a capitol H. I am learning to live with it, I do not want to increase Pred to releave this isolated pain.
I have read many posts on here where people have the same problem, usually with their right hand. If anyone has any experience and suggestion on how to releive this pain, I would very much appreciate it.
Think you might get more replies if you raise a new question about your hand… not everyone will see this reply unless they have saved this post .
As for tapering, suggest you stay at current level until you have returned from Oz….you don’t really want to be starting a new taper just before travelling…best stay settled where you are for now then think about when you are home… a couple of months is no big deal in the great scheme of things…
My rheumi advised to delay tapering until after I’d been on holiday in September. This meant I was on 6mg for 11 weeks but I’ve slow tapered to 5mg successfully since. I always feel stressed just with the travelling so wouldn’t want the additional pressure of a taper and prefer to avoid going up and down on the pred front. So far, so good…although I hesitate to speak too soon!
Hi only just read this as was linked to a more recent post. I too am a golfer and was diagnosed with PMR in October 15mg and currently down to 9 which I will stay on for 4 or 5 weeks - since there are slight niggles in my upper arms - not golf related I’m sure dispit horrid weather - damp and drizzly. But specifically I refer to your right hand pain - don’t know where specifically but I have a very sore thumb - which is probably arthritis from doing too much and also I think trauma from when my dog was a puppy and my thumb got pulled the wrong way as I climbed over a stile! Pred does nothing for it (arthritis) but if your pain is in a joint a cortisone injection will probably really help. I am due for one and it lasts a good 6 months.
Thank you for your reply. I am in Australia for another week, then returning to UK.
The pain in right hand does not seem so bad down here, possibly because I am not using it so often ?? it is definitely not in the joints
I have remained on 6mg Pred since before Christmas as agreed with my GP and Rheumatologist, I have blood tests booked for week after my return after which I am going to try tapering to 5.5mg. I am not expecting this to effect the pain in right hand.
I have a feeling that once/if I ever get off prednisolone, I may have to take pain killers for the hand if it gets too bad
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