To worried to take steroids

Hello Eileen, I remember you writing about your experience of the pain in your hands, how you couldn’t lift pans from the stove etc. And yes the spread of PMR to my hands and wrists, particularly my right hand, is a real crisis point and bad for someone who lives alone. All those inflamed tendons and muscles having to pass through a tiny tunnel. I am astonished at how hot my wrists are. Two years ago I had carpal tunnel severely in my left hand and mildly in the right which healed in a few months. Whether that was a forerunner of PMR or not I don’t know. Peeling veggies and food preparation is the main worry. But I am finding ways to manage and will just have to see how it goes. Ten minutes on ten minutes rest, was how typists kept working and helped their carpal tunnel to get better. So I'm using that formula except for shorter times on.

Overall I’m feeling good. My energy levels are normal and I’m not as mentally and physically fatigued as I was at first. Or depressed (except some mornings in ten minute doses).

Regarding your doubts about PMR burning out in two years, perhaps this website gives a slanted view of the duration and there are people who have it for two years or less and never go on a forum or stop visiting when one they are better. Sufferers in the older generations may not even be on internet and may never identify themselves publicly. They could easily be in the hundreds of thousands. We don’t know what happens to them. Are there any statistics I wonder?

Thanks Mrs K. This forum's very good at making one aware of CGA. I've been a bit frightened of it and have taken the precaution of having a bottle of 25mg of prednisone on hand. I also check the temporal arteries on both sides every day. It's hard to know what a normal pulse should be, but mine over a period of months has had a fairly strong and regular beat. The rheumy checked them out initially but that was six months ago and I can only assume that I am feeling the same as she did. On Monday I'm seeing the doctor so will ask her to check that they are OK.

Thanks for the tip about the lemon. It's certainly worth a try although I would need to dilute it more. I've been taking tablets containing betaine hydrochloride with meals. But they're not brilliant and didn't work when I was taking the steroids.

Best wishes to all Jill

Jill - yes there are some studies about the duration and the 2 year bit seems to apply to about 50%!

Beware, BTW, the temporal artery pulses are not entirely 100% diagnostic either - the only thing that is certain is a biopsy. There are several things that are less commonly mentioned but are quite important.In retrospect I'm sure I had a slight attack of GCA - and I certainly presented with claudication which is very unusual in PMR - and I had vague neck pains and my scalp hurt too much to brush my hair! That is a classical symptom apparently. In my case it lasted about a week or so and then disappeared and I never had visual symptoms - if I had I'd probably have thought they were a migraine anyway.

good luck - good to hear from you again,

EileenH

Re the lemon juice: we spent Christmas and New Year with a doctor friend in the south of Italy. It was, however, NOT warm! One day we were in a cafe and I asked if they had \"spremuta calda\", i.e. freshly squeezed fruit juice diluted with hot water - not a common request there as it is a summer drink and taken cold but the waitress knew about it. The doctor - very concerned - asked if I had stomach problems. I said no, I just like it as a drink when it is cold. After all, mulled wine was unlikely there! But obviously they also regard it as a \"gastric remedy\".

Hi Jill48,

I don't know if I live in a real hotspot for PMR but within 150m of where I live I can think of 6 people who have or have had PMR - or maybe it is a Dr who is quick at picking it up! I almost wondered if it was contagious at one point :shock:

Anyway 3 are men who got over it in less than 2 years, 1 woman under a year, another for about 2 years - and me, just over 2 years - so it sort of proves your point. I can't think any of them accessed, or knew how to use, this forum except me.

The one person I know who has been on about 6mg for 5 or 6 years has a family so dependent on her, and such a generally stressful life, that she just sticks on the dosage she feels comfortable on and which gives her enough energy to lead a very, very busy life! She really needs 48 hours in her day!!

I hadn't heard much about PMR despite my mother having it, and. oddly. all these people (except the long term one) kept pretty quiet about it.

My brother in law lives in a Brisbane suburb so we have been much relieved that the floods are going down there - he is 96. But all over the news here.

Best of luck, Green Granny

Hello Green Granny, Thanks for your response. I suspect that here is a hot spot too. Almost every other person I talk to knows someone who's got PMR or has had it themselves.

The busy family woman you describe makes me wonder if you're thinking along the same lines as me. Which is that in the older generations there might be some reluctance in women to let go of the traditional female gender roles or that they'd like to but their husbands won't let them, or they're younger but in a situation where it's impossible to manage a balance between work and rest.

I suspect that my hands and wrists are involved now because to eat in a way that best supports my body, I have had to do too much in the kitchen. My right hand is more incapacitated than my left though it was the other way round initially?

So much to explore in this misunderstood condition.

Thanks Eileen for that tip about GCA. I did think the artery test was pretty definitive. And I'm very interested that you think it might be possible to have GCA and for it to clear up on its own. Happy skiing!:D

Best wishes and good luck to all Jill48

PMR and GCA are closely related in that they are opposite ends of a continuum. Obviously there must be cases who fall in the middle - i.e. where more arteries would demonstrate the giant cells that are the diagnostic feature of GCA if they were looked for. I assume that this must be the people who have worse symptoms in their large muscle groups - claudication (severe cramps after exercise) rather than just stiffness and some degree of pain. The aorta and other large arteries can be affected - and of course a biopsy of them is rather more complex, to say the least!

At the DVD launch I spoke to a ophthalmologist who was quite intrigued by my report of having had the sore scalp and some jaw pain that resolved itself. We did mention the claudication aspect - which the specialists confirmed WAS a feature - but it wasn't gone into in much detail. I would like to know if it is the people who tend towards this part of the continuum who take much longer to get off steroids and have more relapses/flares as they try to reduce - and if that could account for someone having done better with a higher starting dose before reducing (is it MrsG who has commented on that before - first time high start, easy reduce, second time lower start, problems reducing???).

The problem for many of the doctors is they only see a few patients with PMR so don't see the wide range of responses - plus this daft concept now that you cannot be referred to a named consultant without jumping through hoops and the resulting lack of continuity of care. I had that even before I had a diagnosis (2 visits to the consultant's clinic, not seeing him the second time). I have no objection to not seeing the consultant every time - but I'd like a diagnosis first if you don't mind! :roll: Of course, bizarrely, this is less of a problem if you are not sent to a Uni hospital as there is probably only one rheumatologist to see anyway!

EileenH

Hello Eileen

I was started on 20mg both times and first and second bouts have followed totally different paths

First time I sailed through as soon as I was on the steroids ( apart from real tiredness spells completely whacked at times ) and was on 1mg in a year Now perhaps I realise the tiredness could have been rapid steroid withdrawel

Second time I think my Dr was thinking it was going the same way and it didnt so though the reductions were slower ( 20 to 5 in 14 months ) that didnt work and I went back to 15 and had much more stiffness and erratic blood results It is about 2 years 4months and I have reached 3.5 I dont know why my Dr starts on 20mg She does seem to understand it quite a bit ( I know there are other people in the village with it and we only have one surgery about 6 Drs I think ) She is a believer in hitting it hard and when I had my flare up at the beginning of last year and was trying to go up in 1s from 4mg she felt I should hit it hard and said give it a week and if its still bad go up to 15mg and that was the case She did offer to refer me to a Rheumatologist if the reductions didnt work this time (but so far so good fingers crossed !! ) She did also mention that many people do remain on 5mg for ever

best wishes

Mrs G

[quote:8d53fe3362] (is it MrsG who has commented on that before - first time high start, easy reduce, second time lower start, problems reducing???).

[/quote:8d53fe3362] Yes, I think it is and so have I.

First time started on 30/4weeks with the typical miraculous result. Pain free in 4HOURS.

25/2weeks 20/11days 15/10days 12.5/2weeks All without the slightest problem. After that there were see-saws for 2 months before getting down to 10. Then reduced at 1mg per month down to 4. After that a few more glitches and eventually last dose three years from starting. I was then clear for 5 years. I did put the full schedule on here somewhere ages ago.

This time started at 15. Full details if anyone would like to see them but the point is it has been much much more difficult this time.

Head pain, though, no. Well, not as you describe but I have had stiffness at the base of the skull and neck. Also pain above and behind left ear ( also described here previously. Sorry to be so boring! Also painful bottom gums ( no teeth!!! ) which I described when sympathising with Mrs.O's painful glands ( hope they are getting better ).

I was assured that there was no sign of GCA when I reported the \"ear\" pain and have had no sight disturbance.

Am now coming up to 3 years again but, like Mrs.G, the two episodes have been very different. Would certainly be interested to know why but, as far as I can see and fingeers crossed, there does not seem to be a GCA component in my case.

Hello everyone,I am feeling quite low today.Dr sent me to hospital for xrays and have had a letter yesterday asking me to contact surgery to discuss my results, hope its not more bad news. Hoping for better day tomorrow.I know I will feel better when I read this forum. Best wishes to everyone.

Hello Venetion

I'm so sorry to hear what a bad time you are having at the moment and especially that you are feeling \"low\" today. It will not just be the PMR that is making you feel low but also the continuous pain which I know, from experience, can really drag you down. Before I was diagnosed with PMR I got to the stage where I could not move a muscle in my body and was literally confined to my bed for 3 months with the ambulance staff taking me from my bed and to hospital in a wheelchair for my appointments. That pain (Ibuprofen and Paracetamol had little effect) plus not knowing what was wrong or if I would ever walk again made me feel incredibly low and tears flowed.

Although I spontaneously recovered at the end of a year, unfortunately I then contracted GCA together with relapse of PMR. I am sure I developed GCA because I remained untreated with steroids during my year long bout of PMR - without steroids I was at a 7 out of 10 risk of developing GCA as opposed to 3 out of 10 on steroids for PMR.

Like you, I was scared and horrified at the thought of taking steroids and still am but on the other side of the coin I am so grateful that they are available as the only other choice open to me was life in a wheelchair and, even worse, loss of eyesight.

Yes, there can be side effects but whilst some people suffer a few, many others don't experience any at all.

Because of GCA I had to commence on a very high course of steroids (40mgs) but if you do decide to opt for the treatment then the starting dose will be 15mgs, 20 at the most.

Although I would obviously prefer not ever to have heard of PMR or GCA, I wouldn't swap my quality of life now for that which I was experiencing pre-steroids.

Only you can decide what is best for you because only you know how much pain you can cope with that will still allow you a good quality of life.

My very best wishes and do come back and let us know how you are and I hope you have positive news re your X-rays.

MrsO

Hollo Mrs O, I am most grateful for your reply.I have decided that enough is enough I am in bed and I cannot take any more of waking up with these terriable pains.I am ringing Dr in the morning and I will be takng steroids thanks so grateful to you all.Will let you all know how I get on.Best wishes to you all.

Hi Venetion,

We're all there with you and hope you will really feel the benefits of steroids, and not the side effects which you might not get anyway, very soon.

Keep in touch, all the best, Green Granny

Hi Venetion,

Good luck today and hope that you get immediate relief when you start on the steroids....I wasn't keen on them, but they have made a huge difference to what I can do and anything is better than being bed-bound and in constant pain :wink:

Let us all know how you get on.

Very best wishes, Pauline.

Good luck Venetion :goodluck: . I do hope you find the same relief I did when I started on Prednisolone. There's absolutely no way I could have managed without the steroids in the early days of PMR (September 2009.) I'm now down to 4mgs and so far the reduction has been smooth, I feel a sense of achievement every time I reach another target (it takes me 7 weeks to go down 1mg). However, if (or when) I find I'm not coping with a new dose then I'll adjust it. I want a life and steroids have enabled me to have one while the PMR makes its journey. As you can tell from all the previous posts, we're all on your side and look forward to hearing from you soon. Keep well.

Lizzie Ellen

WELL LADIES AFTER READING YOUR HEALTH CONDITIONS. TELL YOU MY STORY I AM 76 YEARS OLD ALWAYS BEEN ACTIVE ABOUT 6 YEARS AGO I HAD THE EYE STROKE THE GCA SAW DOUBLE. WENT TO DOCTOR I HAD BAD HEADACHES AND MY NECK WAS KILLING ME EVERY DAY OF THE WEEK. I SHOULD HAVE WENT ON BUT THOUGHT IT WAS TOO MUCH COMPUTER. I TOOK THIS AND THAT. NEVER DREAMING I HAD INFLAMMATION IN MY EYES. HE HAD ME SEE THE EYE DOCTOR BEFORE HE STARTED TREATMENT BUT WAS SURE THAT I HAD AN EYE STROKE AND HAD TO EXPLAIN TO ME I NEVER HEARD OF THIS BEFORE. THE HEADACKES STOPPED ON THE STEROIDS I STARTED OUT WITH 20 MG. I FELT GREAT.. STAYED ON THAT BUT FINALLY HAD TO MOVE UP TO HIGH STEROIDS I WAS ON 50MG FOR A WHILE. MY EYES SWELT AND I WAS SO PUFFY LOOKING. FINALLY I WAS CUT DOWN SLOWLY. I BEGIN TO HAVE LOTS OF COLON TROUBLE HE SAID THAT THE STEROIDS WAS NOT THE CAUSE OF THAT. I OFTEN WONDER HAD SEVERAL STAYS IN THE HOSPITAL WITH IT. I GOT OFF THE STEROIDS ONLY A SHORT TIME. WHEN I GO BACK IN WITH THE COLON BACK I GO ON THEM. AT THIS POINT THE GCA WAS GONE. TOOK ME OVER TWO YEARS FOR THAT TO HEAL. WELL LAST SUMMER I GOT VERY WEAK IN THE UPPER LEGS. NOT THE KNEES OR THE LOWER LEGS BUT THE THIGH . HE SAID YOU HAVE PMR THAT I FOUND OUT THAT FOLLOWS THIS GIANT CELL SO I AM BACK ON STEROIDS NEVER BEEN OFF THEM LONG. BUT WHAT DO YOU DO. EITHER AS THEY SAY SIT IN A CHAIR OR TAKE THEM. YOU DO WHAT YOU HAVE TO DO TO KEEP GOING. I HAVE ARTHRITIS IN THE LEFT FOOT REAL BAD NO SWELLING JUST STIFFNESS AND PAIN. BUT I HAD THAT LONG BEFORE THIS OTHER. JUST GOT WORSE WITH AGE. THIS PMR IS JUST ANOTHER NAME FOR ARTHRITIS I THINK. GET CONFUSED BUT I KNOW I HAVE IT. NECK HAS LOTS OF PAIN HAD SHOTS IN THAT AND I DIDN'T DO A BIT OF GOOD. HAD SHOULD PAIN REALLY BAD GOT A SHOT IN IT AND IT STOPPED IMMEDIATELY.I COULD HARDLY MOVE IT WHEN I GOT UP IN THE MORNING.I WAS SO HAPPY TO GET THAT PAIN STOPPED. MIGHT BEEN SOME OF THIS PMR BUT I THINK JUST PLAIN OLD ARTHUR. MY LOWER BACK THE MUSCLES HURT LIKE A CRAMP IN THE LEGS. BUT THAT IS THE ONLY PLACE I AM HURTING AND THAT IS ENOUGH. THE WEAKNESS IS AWFUL. THAT IS WHAT THE DOCTOR SAID WAS PMR IT FOLLOWS THE EYE STROKE HE TOLD ME. I HAD SOME LOWER BACK PROBLEMS ALL MY LIFE. NOTHING THAT NEEDED SURGERY JUST OLD WORN FACETS. OVER THE YEARS I HAVE TAKEN CELEBREX FOR THAT. TAKES WEEKS TO GET THAT INFLAMMATION OUT OF THE BACK BUT AFTER A WHILE I GOT RELIEF. READING YOUR POST I WONDER IF I HAVE THIS SURE MY DOCTOR IS NOT WRONG. I TAKE THE METHOREXATE ONCE A WEEK 4 TABLETS WITH FOLIC ACID SICKNESS AND MOUTH SORES WHICH I HAD BADLY WHEN I TOOK ONE A DAY. I TAKE PLAQUNIEL 2 TABLES AT NIGHT IT IS AN ARTHRITIS MEDS. THIS IS MY FIRST TIME TO JOIN BUT ONE DOCTOR TOLD ME THEY DON'T KNOW MUCH ABOUT THIS DISEASE AS THEY CALL IT. BUT YES AT MY AGE I WILL TAKE WHAT EVER I HAVE TO. AT THIS TIME I AM ON 7 MG OF STEROIDS  AND I AM CUTTING DOWN BUT FEEL MUCH WORSE THAN I DID FEW WEEKS AGO WHEN I WAS ON 15 MG. BUT I WILL TRY TO SEE HOW I DO WITHOUT THEM. ONE DAY AT THE TIME PLEASE JESUS.