Long time no see.

[May10]

I have not posted for a long time but I do follow the site .

I had PMR in 2016 and did not react very well to the Pred. I managed to come off it completely last year after paying privately to see an endocronologist. When I say "see" I mean phone calls because of Covid. I still have problems and always feel exhausted.

My scalp has been sore to touch for the past year but no other symptoms, until about 3 weeks ago when I started with a sore head. I am used to headaches but I have never had anything like this before. I phoned the doctors and because of my history I was asked to go to the surgery where I was given a prescription for pred and a bloodtest , which came back negative . Within 2 days I was at the local hospital having a temporal biopsy.

This is also negative, so I am having to reduce from 40mg. I feel rubbish on this medication as I cannot sleep, I have gastritis which is made worse. I have osteoporosis, numb and tingly hands where I drop everything I touch, back to being breathless etc.

My CRP etc was never conclusive for PMR, which I know can happen, but what about GCA. Can you have it with negative results?

[DorsetLady PMRGCAuk volunteer]

You can have GCA without raised inflammatory markers….and with a negative biopsy which can occur if the tiny sample taken didn’t have any affected cells in it. They aren’t located throughout the entirety of artery and may not be even be in the temporal artery, but that doesn’t mean they aren’t in other ones….

You may feel rubbish on the Pred, but has it stopped the scalp tenderness and the headaches? That’s more important than the test results….so if they haven’t gone completely or return as you reduce you need to advise doctors asap…

[May10 in reply to DorsetLady]

Thanks Dorset Lady, I was hoping you and PMRpro would reply to me. I think I knew your answer but nice to get it confirmed. I have only been on pred again for 2 weeks but I will certainly keep an eye on myself when reducing.

[DorsetLady PMRGCAuk volunteer in reply to May10]

Oh course we would..😊 hope all goes well, and keep us informed please.

[May10 in reply to DorsetLady]

After reducing the pred to 10mg per day, the scalp tenderness came back. A week later the headaches started again. I have had another blood test done, I am awaiting the results. The young doctor suggested another biopsy....I am not keen on this . I am trying to find out more about a scan.

[DorsetLady PMRGCAuk volunteer in reply to May10]

Not sure about biopsy either - and obviously it will have to be done on opposite side of head to previous one ... see what the results of blood test are, and take it from there.

As we said before a negative biopsy doesnt prove you don't have GCA - symptoms [hopefully supported by bloods] should dictate the way forward... and not sure how successful you will be getting a scan..but always worth asking.

See these - nhs.uk/conditions/temporal-...

vasculitis.org.uk/about-vas...

[PMRpro Ambassador]

Yes - inflammatory markers may never be raised or only after a delay. And the biopsy being negative doesn't mean you don't have GCA - it means they didn't see what they were looking for. There are several reasons for that - one being it may not be present in that artery, it isn't evenly spread everywhere. If it is positive on the other hand - 100% certainty,

If the symptoms improved on 40mg and return as you reduce the dose - go back to the doctors.

You should have been given a PPI - and possibly even offered enteric coated prednisolone as this can make a massive difference with gastritis.

[May10 in reply to PMRpro]

Thanks PMR for replying so quickly. I think i knew the answer but good to get it confirmed. I will be very careful monitoring myself.

[SnazzyD]

I was one of those, negative biopsy (done after 8 days on 60/40mg Pred) and inflammatory markers within normal limits though raised for me personally. I was treated as GCA because 60mg Pred resolved my symptoms within hours, though Pred gave me a whole lot more. I did wonder if it was a false diagnosis but after a spell of poor absorption of Pred (long story) in the early weeks, my symptoms came rushing back.

[May10 in reply to SnazzyD]

Sorry I didn't reply yesterday, but I am feeling awful on pred. We'll see what happens when I reduce.

[Rugger]

I'm sorry to hear this. Some centres use ultrasound to try and diagnose GCA. It is less invasive than a biopsy and they can cover a wider area than just 1cm. Recently, I was a subject on a national training day in Leeds, where doctors and sonographers were trained in the technique. Four years after my diagnosis of GCA-LVV they were still able to see the changes in some of my arteries!

Best wishes to you.

[May10 in reply to Rugger]

Can you tell me where I can find out more about the ultrasound. After reducing the pred, the scalp soreness and headaches have returned. I went back to the doctor and saw an even younger one than last time. I have had another blood test done and she has suggested having the biopsy done again. I told her I am not keen on this and that there was a scan that could be done. She knew nothing about this.

[DorsetLady PMRGCAuk volunteer in reply to May10]

Have replied here ...

healthunlocked.com/pmrgcauk...

[Rugger in reply to May10]

I don't know for sure, but I imagine you have to be referred for an ultrasound scan by a Rheumatologist. Not every hospital has the staff who are trained to carry out the U/S and interpret the results - hence the training day that I took part in. Some of the delegates on the course were Consultant Rheumatologists, learning the technique for themselves. You could ask your GP for a Rheumatology referral and enquire whether they are geared up for GCA diagnosis by ultrasound. The idea of a second biopsy isn't very thrilling, is it?

If 40mg of pred dealt with your symptoms and 10mg isn't, then it sounds as if you've passed the lowest dose required to keep the inflammation under control, at the moment. Maybe you need a few more mgs?

Let us know how you get on.

[PMRpro Ambassador in reply to May10]

Who hasn't got their brain in gear? Since the biopsy removes the temporal artery - you can't repeat it! If the temporal artery has been removed - you can't u/s it either, You CAN look at the subclavian and brachial arteries in a quest for LVV but not much help for cranial GCA,

[Rugger]

I forgot to say I have been on gastro-coated pred for years. With a diagnosis of gastritis, I should hope your GP will happily prescribe it for you.

[May10 in reply to Rugger]

Hi Sue, I was on the gastro coated too, but just accepted the ordinary ones as I had been off them for about a year, probably forgetting how rubbish I felt on them first time round. I will keep in mind the ultra sound. My GP is young and didn't know a lot about CGA. She did acknowledge that I knew quite a bit about the 2 conditions . I have no follow up just let them know if any changes occur.

[Hidden]

hi..my first post here but I do read and learn so much from this forum..in reply to May10, I was diagnosed with PMR in 2017. After my near death to PMR, I recovered a lot from being on 60mg Pred. I was then able to research this horrible intrusion on my life on the internet. I found that science research said that all who have PMR do not always have GCA, but those with GCA will almost always have PMR. That is me. My Rheumie never told me anything about GCA after my PMR diagnosis. I learned through research. I asked my Rheumie to refer me to someone who could do a temporal biopsy just to rule it out and to ease my mind. I had biopsies on both sides of my head. The results were negative. Great!! However, in the meantime, Pred led to a fast onset of cataracts which I had removed at a great facility here in Ohio. One day at Walmart, I just walked inside when I started to see blury things out of my right eye. I tried to wipe my eye and took my glasses off and cleaned them. Nothing helped. It is prob. comparable to have matter in the eye when getting up in the morning. I went thru the store and got what I needed all the while my right eye kept getting more blurred. By the time I took my groceries to my van outside, I could not see hardly anything out of my right eye. I just assumed that it was my cataracts clouding over and that I needed to get back to the eye surgeon asap. Meanwhile, no pain occurred at all in my head or eyes. I drove home using my left eye..some 30 miles away. I finally got to the eye surgeon and he said it was not the cataracts, confirmed my loss of sight inthe right eye. He also said that my previous temporal biopsies were a false negative result. He diagnosed me with GCA as he did very thorough eye exams, some different than any other exams I have had. He advised me to go home and take 60mg of pred. right away and then taper down to my normal dosage until I could see my Rheumie again. I was devastated to say the least! But I remained optimistic. I have a nephew who lost sight in one eye when he was younger. If he could go on with life, then so could I. A lot of prayers went up for me. Maybe a month later, I noticed that I was regaining some sight in that eye!! I did not tell anyone for fear that I was wrong. Then one day, I told my husband that I thought I was seeing things, though blurry, in my right eye. I do not know how long it took but eventually my sight returned. I went back to my eye surgeon to confirm and I he was in disbelief. He said this never happens!! I replied and said "This is a 'God' thing", to which he answered "Yes, it is a 'God' thing" ..normally it is permanent eye loss due to the optic nerve stroke due to GCA. One could lose sight in one eye or both, or worse.".. Well, when I got home, I researched GCA and side affects. What did the worse mean? Possible death!! At first I was devastated. Now, I just leave it in the Lord's hands and just try to do what I can for myself and my health. I has been about 6 years now. I am a 74 yr old young lady here in Ohio, USA. I try to never think negative and I avoid all stress if possible. That is not easy. I still have almost daily headaches, sore scalp, sharp pains in either or both temples.. lower skull pain/pressure in the back of my neck. I deal PMR/GCA, Fibromyalgia for years, Myofacial, Osteoarthritis, degenerative spine, Trochanteritis bursitis on both hips, IBS-D, and so much more. Life is not so easy, but I refuse to become negative in spite of being around people who have no clue or even a desire to try and understand all that I am going through except my husband of 54 years in six days!! Do what is right for you. Be firm with your doctors who insist on 'this or that'.. You know your body and know what you are comfortable with in the way of drugs. Prednisone has been a lifesaver, but in return it leaves one with many other health issues. Eat, drink, supplement

[May10 in reply to Hidden]

Gosh, what a time you have had. I am reducing the pred and waiting to see if the symptoms return.