a month into my diagnosis of pmr and undiagnosed gca?

[tiddlypom7]

hi everybody out there one month in on 15mg pred .it has cleared my aches & pains but head problems still persist. .have been to see an opthalmologist, & neurologist and had my eyes checked at the opticians. They say they are not sure it is gca.blood tests are normal.but eye problems still persist and temple pains are still the same.they are thinking of doing a biopsy on a artery. Gp has put me down to 12.5mg of pred yesterday.anybody had this biopsy done?is it a minor procedure? kind regards tp7 alan

[Celtic PMRGCAuk volunteer]

Hello Alan

Gosh, I fail to understand why your GP has put you down to 12.5 of Pred yesterday when you say GCA is suspected and a temporal artery biopsy is being considered. If you do, in fact, have GCA/TA, then your steroids need to be increased to at least 40mg, and fast, to protect your eyesight. Yes the biopsy is a relatively simple procedure, but after a month on steroids it may prove inconclusive as the steroids could have reduced the large cells they would be looking for by way of diagnosis. If I were you, I would get an emergency appointment with your GP, downloading and taking with you the British Society Guidelines for the Management and Treatment of GCA - you can Google it or find it by going to the home page of PMRGCAuk above. Failing that you would be wise to go straight to A&E telling them about your diagnosis and your eye problems and temple pain and your current steroid dose. If it was me, having experienced both PMR and GCA, I would do the latter. I do wish you well.

[tiddlypom7 in reply to Celtic]

hi celtic thanks for your quick reply I have suffered with the head aches and vision problems for two and a half years. they seem to think i would already be as blind as a bat if it was gca.They said that with gca the headaches would be much more severe.I have discussed this with them in great detail. I should also mention that i have parkinsons so i have that ailment to contend with,a double whammy. what bad luck or is it sods law. Anybody else out there with this double. kind regards tp7 alan

[musicality in reply to Celtic]

The Fast Track method used 2day by enlightened doctors is by a scan as biopsies can yield patchy readings especially if sufferer has already started on steroids.

[2watsons]

i agree with Celtic ,the biopsy is no problem ,my was in conculsive as where my blood results ,GCR NEEDS to be checked with great care ,mine was missed and lost use of one eye .So please check check .Take care .

[tiddlypom7 in reply to 2watsons]

hi 2watsons thanks for your prompt reply.I take on board your comments,and i will push my consultants for more action very best wishes tp7 alan

[Celtic PMRGCAuk volunteer]

Alan - oh yes what rotten luck getting PMR, especially when you already suffer with Parkinson's. I have a friend with Parkinson's so I understand and really do sympathise with what you go through. I do hope your medics will investigate your eye problems and temple pain thoroughly and come up with an answer and the right treatment to relieve you of the pain. During my time with GCA I suffered with intermittent pains in my head, face and eye area which caused some confusion. However, it turned out to be neuralgia - it appeared that the GCA had left a weakness which meant even the slightest puff of wind, draught from such things as air conditioning units, even dental work, would set off the nerve. Could there perhaps be a possibility that your pain is some sort of nerve pain perhaps?

[tiddlypom7 in reply to Celtic]

hi celtic thank s once again for your comments .As i said in my other letter my neurologist is onto it so hopefully i will hear something shortly best wishes alan tp7

[hege]

Don't worry about the biopsy it was fine,the procedure was carried out with a local and did not hurt at all.Mine proved positive so my advice is to have one as soon as possible to put your mind at rest.

Very best wishes.

[tiddlypom7 in reply to hege]

hi hege thanks for your comments will push for this procedure as soon as.kind regards tp7 alan

[Whittlesey in reply to hege]

Would agree with hege on this. It isn't too bad and then you know. wishing you luck and health, Whittlesey

[jinasc]

Alan

Are you anywhere near Moorfields, the best eye hospital in the UK?

[tiddlypom7 in reply to jinasc]

hi sambucca thanks for your advice .regretfully i live a bit of a distance away on teesside but it is something that is good to know best wishes alan tp7

[confettibridal]

Hello Tiddlypom,

You say you have suffered from the headaches/eyeache for 2 1/2 yrs, but not when it started in relation to your PMR/commencement of medication.

I experienced a headsplitting headache commencing 4 days after first starting on the steroids - that was over a year ago. GCA was never mentioned!

I still suffer from a permanent headache & 'ringing' in the ears, although it has diminished considerably I am never without it.

Therefore I wonder if your problem could be a side effect of the pred?

Regards,

Confettibridal

[tiddlypom7 in reply to confettibridal]

hi confettibridal thanks for your reply.I started with the head aches about two and a half years ago .they take the form of a tingling burning sensation in both temples and across the top of my head, at this stage i had no pmr symptons. i only started about 5 weeks ago with these, gp started me off with 15mg pred reducing to 12.5mg after one month. but i felt some slight aches this morning from my muscles.hope the dreaded pmr is not returning? side effect of the pred. weight gain && ravenous appetite is not to my liking.after umpteen visits to gp & consultants i am just about on first name terms with all of them. we battle on kind regards alan

[TIDDLYF]

Hi have just been diagnosed with PMR and given steroids. I already use health unlocked for other problems so thought I would see if PMR was here. Just have to ask what is GCA.

[Celtic PMRGCAuk volunteer in reply to TIDDLYF]

Hello Tiddlyf

I'm sorry to hear you have just been diagnosed with PMR and I do hope that the initial dose of steroids has quickly eased your pain.

GCA (Giant Cell Arteritis) is a condition which is linked to Polymyalgia. It is possible when suffering from one condition to succumb to the other. GCA can manifest itself by various symptoms, including head, eye and jaw pain, and it is important not to ignore such symptoms as higher dose steroids are then needed to protect one's eyesight. Ensuring complete control of the inflammation of PMR can go a long way to preventing GCA from arriving through the proverbial 'black door'.

I hope you feel better soon but don't be tempted to reduce your steroid starting dose too quickly.

[confettibridal]

Hi Tiddlypom,

Your symptoms are clearly not a reaction to the pred then. But I (after 14 months on pred) would concur with other comments that you have dropped your dose very quickly - nothing happens quickly with this conditon.

The treatment quoted by John Kirwan, Consultant Rhemy @ Bristol in this months' PMR-GCA Northeast mag is: 15mgs daily for 6 weeks, 125mgs daily for 6 weeks, 10 mgs daily for 1 yr then reduce by 1 mg daily each month. That is 2 yrs of taking the steroids.

I'm thinking of going back to the beginning & trying this myself.

All best wishes.

[confettibridal]

Sorry -that's 12.5 mgs daily for 2nd 6 weeks!!!!!!

[polkadotcom]

confettibridal, I don't personally know of anyone who is trying - or has tried -the Bristol method, but I have heard very good reports for it. If you are having problems with recurring PMR or GCA symptoms, then going back to the starting dose would be a good idea. One point though, as you are not new to steroids you may find you have to stay a little longer on both the starting dose and the 12.5mg dose , but in the longer term a couple more weeks is neither here nor there.

[Vpankhurst]

Yes I had this procedure at my local hospital it was done under local anaesthetic and was not at all painfull it confirmed I had GCA I atso took part in the Tabul study where they hope to find a better way of diagnosing GCA but at this moment in time the biopsy seems the only certain way. My blood count was 135 and had to go on 60 mg of steroids a day but 6 months down the line take 18mg a day there have been a couple of flare ups but have managed to come down on the dosage. Have a lot of aches and pains in shoulders and hips but manageable some days worse than others but still determined to get on with life to the best of my ability and not let it stop me doing what I want just have to pace myself more which I admit I do find hard to do.

[mickt]

I to had a biopsy negative it was ,but had symptoms of pmr gca amourosis fugax,double vision,crp 215 when admitted to hosp,4 weeks of stiffness legs, calfs lower back, tender scalp.The biopsy didn't feel a thing so don't worry about it.On cyclo treatment now, reduced pred to 30 mg day,starting to get burning stiffness in same areas when sitting not bad when moving about ..Slows you right down this disease. They treat symptoms I think ,a reaction to pred tells them that you've got pmr gca I think.

[Whittlesey]

I would think if you are having eye problems, probably should have the biopsy, at once. I had it. Had some tenderness, headache, after the biopsy, but not really bad. Was given oxycodone for the pain which helped initially, then switched to tylenol. GCA can cause swelling in the temporal arteries, then not enough blood supply can get through to the eye nerve and you can lose your sight, sometimes irreversible. Would get tested at once. High dosages of pred., will prevent the blindness. but they need to know what they are dealing with. My first opthomologist spoke of teating people who had lost their sight due to GCA. would urge "don't fool around, just do it." If you are fairly young, would insist. I was 59 with a high c reactive protein, regular sed rate and horrible headaches. Two neurologists did not want to do a biopsy, saying I was too young for the disease and probably had a bad migraine. My mother had GCA and almost lost sight in one eye. I kept insisting. My neuro surgeon for my thigh, saw my results in the hospital computer and said, "you may have it, I would like to a biopsy, would that be ok with you?" I said ,"yes". and a few days later, --- Yes, I had this disease. The biopsy itself is not really a big deal. just treat like any wound. would get the test.

wishing you all the best, Whittlesey, NYC

[Whittlesey]

Hi Tiddlypom7, I had the biopsy in May, '12. It wasn't a bad surgery. short time, maybe 30 minutes. Was in recovery 4 hours or so. I chose to stay overnight in the hospital. I am divorced, live alone in my NYC apt. and didn't know what to expect. Doctors were surprised that the biopsy showed giant macrophages, which had burst the cell walls and some of the killer t cells had developed. That's the diagnosis for GCA. They started me on 100 mgs of prednisone a day. I stayed another day. When I returned home, got sick from the prednisone. found a rheumatologist who switched me to methylprednisolone, and nexium.

I am now taking 5 mgs per day of medrol and 20 mgs of methetextrate a week by muscular injection. feel much better. Have found a very good rheumatologist who listens and works with me on this disease.

The biopsy isn't bad at all. Had the Visiting Nurses for three weeks come to nurse the wound and an occupational therapist to deal with my vision changes, from some vision damage in my left eye and depth perception problems.

It's not bad and if it's positive you can begin to deal with this serious illness to avoid blindness and other problems.

Wish you well and hope your biopsy if you have one, is not positive. If it is you can deal with. best wishes and good health, all my best, Whittlesey NYC U.S.