PMR connection to symptoms?

SSpacek

Can you please go the the heading 'Using the weights in the Gym' and read the thread and the reply posted by Mrs K.

This is just to save me repeating myself.

However on the specific question re 'sweats' - yes I had the problem return the minute I went on Pred. So quickly went to GP and insisted I went back on Premarin 0.625mg per day (HRT).

It made a big difference. However if your GP is reluctant to prescribe it there are two homeopathic remedies which may work for you - but they are not cheap.

Evening Primose Oil and Sage Extract. The latter I find works better for me.

Sometimes when woman go through the menopause or has had a hysterectomy, it sort of interferes with the sweat glands and instead of you losing sweat as per normal, it concentrates in the head, face and chin.

An gynae bloke once said to me, the person who finds a cure for this one will be a millionaire in no time at all.

Hang on in there you have joined a not so exclusive club and you are not alone.

Hi sspacek and welcome to the forum that we'd all rather not have had to join but wouldn't be without! Mrsk has already given you a lot of helpful advice and I'll just add my experience in case it helps also.

If you feel that the \"instant sweating\" is very different to the hot flushes that you experienced with the menopause, it is possible that the steroids may be the culprit as I have occasional ones right out of the blue and I am 68 so the menopause is well and truly done and dusted! However, have you had your thyroid checked because that could be another possible cause of the sweats?

As for the blurring of your vision have you had your eyes checked for cataracts? I have developed cataracts as a direct consequence of Prednisolone and I do get occasional blurring especially if I am tired. As you commenced on such a high dose of Prednisolone, were you diagnosed with both PMR and GCA? I have both and my starting dose was 40mgs 3.5 years ago and I do wonder if it was this high starting dose that made me susceptible to cataracts.

Did you have raised ESR and CRP inflammatory markers at the outset of PMR? If so and your pain continues perhaps these blood tests should be carried out again and if they raised then it would be wise to increase back up slightly on the dose. If an increase is necessary and you put up with the pain too long then it could mean you having to go up to an even higher dose to get the inflammation under control.

The numbness in your shoulder blade area may be connected to the degenerating neck vertebrae and osteoarthritis. I have recently been having very gentle physiotherapy/massage on a painful and swollen shoulder blade and arm area and it has given me so much relief.

Do hope some of this is of help and that your pain settles down on the latest dose.

MrsO

hello sspacek. when i was first on high dosages of steroids i sweated a lot, day and at night, like you it was dripping of me, as the steroids decreased so did the sweating. i also had and still have blurred vision, and was diagnosed with cataracts, as a direct result of taking the steroids,. i was also very breathless. but am ok now. good luck margaret e.

Hi There Sspaceek,

I too have really bad hot flushes night and day - when I was going throught the Menopause (I am now 56) I only had night sweats - so I assumed it was the steroids and my GP confirmed it - but did not give me advice to alleviate them. Any advice would be helpful.

I am on 7.5 mgs at the moment and still have very stiff neck and shoulders so I'm thinking of going up to 10mg - I was diagnosed in May 2009 but had had my symptoms for 2 years before diagnosis! I was at my wits end and thought I was seriously ill. But I was so pleased to be diagnosed in the end - really hoping I can get back to full health but fear I'll always have the aching and stiffness.

Its great having this site - so I know I'm not alone.

Regards

Carol Anne

Hello Carol Anne

Yes, the steroids do interfere with the hormones somewhat and I, too, have suffered the consequent hot flushes. Hopefully, you may find as I have done that they will reduce dramatically as you lower the dose and I found that avoiding carffeine has been the answer for me. Hopefully there may be some further suggestions to help you so do keep coming back to the forum.

Best wishes,

MrsO

Hello Carol Ann

Yes I also had sweats when I started on steroids ( menopause a very long time ago !!) They werent terrible but did seem to be brought on by too much coffee and say diet coke which has caffeine too Now I am on 6mg I seem OK but if I do sweat it will be at the nape of the neck Very strange never sweated there before !!

Still happier to have the steroids though !! I bit achy today hope it is only the miserable damp weather

Best wishes Mrs G

Carol Ann

I answered this on the other thread currently on the go 'using weights' perhaps you missed it.

However on the specific question re 'sweats' - yes I had the problem return the minute I went on Pred. So quickly went to GP and insisted I went back on Premarin 0.625mg per day (HRT).

It made a big difference. However if your GP is reluctant to prescribe it there are two homeopathic remedies which may work for you - but they are not cheap.

Evening Primose Oil and Sage Extract. The latter I find works better for me.

Good Luck

Hello Sspacek -

Blurred vision and headache

I haven't contributed to this site before though I read it regularly.I am 71 and was diagnosed with PMR in early January after all the usual symptoms - almost a textbook case - except that it started only in my left knee which was a bit of a red herring and delayed diagnosis until the other symptoms kicked in.

Anyway - to cut a long story short - don't ignore the blurred vision and headaches - it could be temporal arteritis. I have also had temporal arteritis though it went undiagnosed because I didn't have the usual symptoms (tender scalp, severe headache swollen temporal artery, jaw pain etc.) and once I was on the prednisolone for PMA my inflammatory markers were normal. It has resulted in some loss of vision in my left eye (a reduced field) and some loss of colour vision. After consultations with my rheumatologist and with an opthalmologist and a brain scan (to rule out other causes), it has been decided that it must have been temporal arteritis that caused the vision loss ang that it might have preceded the PMA (as I had some headaches - though not severe and

I felt I maybe needed new glasses).

Anyway - prednisolone has proved very successful at controlling the PMA symptoms and my eyesight is no worse. I am still on 9mg / day and hope to reduce to 8mg when I see the rheumatologist next week.

When I see what a rough time some of you have had I feel I have been very lucky. I can still go for medium length walks and I swim every week and have avoided weight gain. The most annoying side effect of the prednisolone is the fragile skin and easy bruising - when I visit my toddler grandchildren I end up with delightfully purple spotted arms and legs - I feel I should wear shin pads when I visit!

Anyway enough about me - just remember you can get temporal arteritis without showing the usual symptoms - it's worth getting it checked out.

Best wishes - Mrs H.

Purplecat

Am I quite clear that you were diagnosed with GCA in January this year?

Where you started on a high dose (ie 40mg) or 20mg and are now down to 9mg and hoping to come down to 8mg?

You may like to visit www.pmr-gca-northeast.org.uk and under the heading Useful Information read the British Society of Rheumatologists Guidelines on GCA and PMR.

I also hope that you had an eye test as a 'marker' and are having six monthly eye tests to see what is happening with your eyes. As a GCA person you are entitled to six monthly tests without paying for the additional test. The Optician fills in a special form.

Do not rush to reduce the steroids, they are standing between you and loss of any more vision.

I assume you had full spectrum blood tests and that you are having monthly blood tests of both ESR and CRP which a good markers.

Also ask if they checked the Vit D level and ask for a Dexa Scan.

Visit the site, there is a wealth of information on it both medical and people's stories.

Mrs K. - Thanks for your interest.

I was diagnosed with PMR (by my doctor) early in January and full blood tests showed a ESR of 68 so she started me on 15mg/day of prednisolone which gave me relief from the severe PMR symptoms within hours. It was another 5 weeks before I got an appointment with the rheumatologist, During that time I had an eye test which showed possible problems with the field of vision and I was referred to the Opthalmology Dept at the hospital.

When I saw the rheumatologist (5 weeks after PMR diagnosis but before the opthalmology appointment) my ESR was down to 6 (and has remained at that level ever since). We talked about the possibility of GCA and she examined my temporal arteries (which were not swollen, had a normal strong pulse and I had none of the other symptoms of GCA). She was unable to do a biopsy as by then I had been on prednisolone for 5 weeks and so this would mask the problem if there had been one.

On March 3rd I started reducing to 12.5 mg of prednisolone and initially I had slight PMR symptoms though by splitting the dose 80%-20% these soon eased. However I did get a headache - not severe but somewhat persistent. I spoke to the rheumatologist on the phone and she told me to take 45mg of prednisolone for 5 days and report back. The theory behind this was that if the headache faded away in a couple of days it would indicate that it was GCA. However the headache persisted and it was decided that it couldn't be GCA and she told me to go back to 15mg for a week and then drop to 12.5 mg.

I didn't get an appointment with the Opthalmology dept until March17th (by which time I was on 10mg) and over the next few weeks I had various tests (field of vision, colour vision, pressure and also a brain scan to try to eliminate other causes of my eye problem. Glaucoma, cataract, diabetes and brain tumour were all ruled out and the opthalmologist and rheumatologist together decided that I must have had GCA as it was too much of a coincidence to be anything else. It is possible that the GCA predated the PMR as I had headaches before Christmas and my vision seemed to be deteriorating a bit. The opthalmologist discharged me and left me in the care of the rheumatologist.

I stayed on 10mg for 2 months and then reduced to 9 mg - my present dose. The rheumatologist says she expects me to stay on steroids for at least 2 years and I think you are right when you say I should not be in a hurry to reduce the dose.

Yes - I did have a Dexa scan within 8 weeks of diagnosis and my bone density was normal which is pleasing - I do of course take calcium and Vit D tablets.

I was pleased to know about 6 monthly optician appointments for GCA sufferers and I have picked up lots of other useful tips from the website and the forum. I am also lucky in that both my GP and the rheumatologist are very supportive and approachable - as was the opthalmologist.

Anyway - thanks again for your interest and advice - sorry to be so long winded in what I write but it was quite complicated.

Cheers - Purplecat

MrsK,

I find this very interesting as when we had the launch of the DVD in Newcastle in May I was chatting to the ophthalmologist from the ******** Hospital. Great emphasis was placed on the temporal arteriitis symptoms by the rheumy I saw - and I had to deny all the things he asked me. However, in retrospect I remembered a period when my scalp was mega-sore, it hurt to brush my hair, it felt as if I'd plastered down my hair when it was wet, let it dry and then tried to brush it down against the direction it was lying - if that makes any sense to anyone. It lasted a few days, there were no other symptoms and it went away. I can't remember when it was, but certainly after the PMR symptoms started.

I have a foggy bit in the middle of my vision, on the photos taken by my optician there is what he assumes to be a \"floater\" to be seen, but other than that nothing remarkable. That foggy bit appeared about the same time as these other things as far as I can remember. I find it irritating at times but my overall vision checks are perfectly OK.

The ophthalmologist seemed intrigued and said she had never heard of TA resolving without treatment but... Are we beginning to find more \"atypical\" presentations of PMR and TA as a result of these forums?

EileenH

(Sorry but Patient Admin have removed either a Consultants name, a Doctors name and or a Hospital / s name / s from this posting as it is the policy of Patient UK not to publish these on this forum. If you wish to communicate directly with people, you should register, for free, with the forum (click Register in the menu list below the green banner above). You and other registered members will then be able to communicate with each other via Private Messaging (PM) or e-mail.)