On the 24th February I went to my GP as I had been experiencing 9 days of severe headache. As a migraine sufferer for the last 55 years it had taken a few days for me to realise that a) it wasn't diminishing in intensity and b) the pain and other symptoms were not associated with my usual migraine related ones. The GP sent me straight to the hospital and I was there for the rest of the day until my blood results showed an ESR of 81. I was diagnosed with Temporal Arteritis (Giant Cell Arteritis) and commenced on 40mgs Prednisolone. Regular blood tests at first showed my ESR responding but the headache did not go for 19 days. When the steroid was reduced by 10 mgs the headache returned with a vengeance. An added complication is that since March 2016 I have been experiencing outbreaks of shingles almost non-stop. I had received medication at the onset but it had not stopped the attack and as one set of blisters appeared to be fading they would start breaking out again. This was alongside the nerve pain which ran parallel to my shoulder blades. Since February my ESR has been 81, 69, 49, 25, 13, and then 61, 25. My prednisolone doses have been 40mgs, 30mgs, 20mgs, and then back up to 30mgs now in the last 3 weeks reduced by 5mgs fortnightly when ESR went down to latest recording of 25. I have been on 20mgs since 11th July. When I saw the GP last I had also discussed muscle spasms/cramps, for which I already take 300mg quinine sulphate tablets nightly, had intensified and were lasting hours most nights. These were in my feet, ankles, calves, thighs, hands, arms and spine. The Dr. examined all my joints, noted the water retention in my feet and ankles and fingers and arms and the pitting oedema especially in my feet and said that he thought I also had Polymyalgia Rheumatica which has research based evidence linking it to GCA. He seemed happy with the medication that I was on and I have to see him again after my next blood test in 9 days time. Now to add to this sorry tale of woe; for the last two days my left foot and ankle have swollen to 3 times normal size and it is very painful to walk. The pain is a burning one and the skin from the base of my toes to a quarter of the way up my shin is red and shiny and feels like it is on fire. Applying cold to the area is the only thing that is relieving the pain. It is scary. I am left wondering what next and how much more can I take. My days and nights are 80% pain. I feel as if everything is beyond my control. The medications make me feel weird. My perception is altered and I am dropping, knocking over nearly everything I touch and misjudging where doorways are and walking into the door frames. The Dr. is aware and thinks these effects will reduce when the steroid levels are lowered more. Please is there anyone who can help me to understand what is happening and or has knowledge of what will help me to help myself to recover?
Looking For Answers. New to the site and desperate. - PMRGCAuk
Looking For Answers. New to the site and desperate.
What a horrible ordeal! There are some real experts on this forum who will be along with sound advice and encouragement. It is best
If you try to rest and let the prednisone start to work. Having the shingles too is a real blow. Someone on this forum will unfortunately identify with your pain. Just the migraines alone would be unbearable. I think putting ice on your feet and ankles will help with the swelling. Try to get some sleep, even if it is twilight sleep. The folks on this forum will be along soon💕💕
Thank you for your response. I feel a little less 'alone' since reading the responses to my first post. I was beginning to think that I was going crazy. It seems as if I am gathering speed on a very slippery downwards slope. I have seen my GP and he has put me on 2 grams of flucloxacillin daily for 14 days but says if the swelling and inflammation don't begin to resolve after 4 days he will admit me to hospital for intravenous antibiotics. This I hope to avoid. I just wish that these conditions were not so painful. Thanks again.
MavisEllen...you will recover, it will just take some time and this forum will give you some good suggestions to cope with the worst of your ordeal....hang in there!
Thank you for your response. I am already finding this forum helpful and supportive. I have felt so alone and almost isolated although I have a very caring husband I think at times I am wearing his patience thin as he has seen me reduced to tears most days and that is like me at all and not how I want to be!
MavisEllen...another thought.
I believe there was someone on this forum from Australia that had started on a drug called Actemra that may work forGCA (temporal arteritis)....ask your doctor about it.💕
Thanks. I am looking into this drug and have read several reports on it and some related drug trials in the UK.
That sounds horrendous. I think you must see your GP immediately re the swollen red shiny legs. It sounds very much as though you might have cellulitis. My sister had it and it sounds pretty much like you describe. Have you been referred to a rheumatologist? I do think a specialist should be on your case immediately. As for the muscle cramps, the steroids can be responsible. So sorry about the shingles. That alone is an awful thing. Are you on Acyclovir for that? It is so uncomfortable. Please let us know what happens.
Love and hugs.
Liz.
Thank you for your response. I saw my GP first thing Monday morning and he has commenced me on 2 grams of flucloxacillin daily for 14 days with the understanding that if the cellulitis does not start to resolve by the 4th day he will admit me to hospital for intravenous antibiotics. I want to avoid that if I can. I have not been referred to a rheumatologist as when I mentioned it my GP didn't think that it was necessary and as I am being treated by the senior DR. of the practice and he is also the main DR for gerontology related health issues I didn't question his decision. The muscle cramps have been constant for the last few years but do seem to be getting stronger and last longer. I did see a consultant about 18 months ago but no cause was found and I was signed off by the hospital and told to continue to take quinine as nothing else could be done. As for the shingles I have had a full course of Acyclovir at the beginning of the attack 15 months ago, then a month ago I was started on a preventative dose which has done nothing to clear the few blisters I now have or to stop the nerve pain alongside my left scapular (shoulder blade) Thanks for caring. MavisEllen
As you are having visual problems, it sounds like your dose of Pred is not high enough. The leg does sound like cellulitis, my husband gets it, it seems to come back every 3 yrs. I would be thinking of going to A+E, are you in UK? Hope you get some help very soon.
Hugs Marci xx
Thank you for your response. I have seen my GP here in the UK first thing on Monday and have been commenced on 2 grams Flucloxacillin daily for 14 days. He has said that if the cellulitis does not start to resolve after four days of treatment he will admit me to hospital for intravenous antibiotics. I do hope that I can avoid hospitalisation. My GP constantly wants to reduce my prednisolone and it jumps down 10 mgs monthly and recently to reduce the side effects 5 mgs fortnightly but since February 24th I have only had 16 days without a severe headache like an invisible hairband temple to temple and a feeling of pressure by each ear. As the ESR results reduced so did the pred. Then when ESR shot up again, the Dr. increased the pred again. Up or down any change makes me feel 'strange' as if spaced out. I have gone from one small dose 2.5mg Bisoprolol to control my blood pressure, which it was doing brilliantly, to 16 tablets a day. All seem to have a whole load of side effects which present me with more and more challenges to overcome. I am determined to beat this but my life has changed so dramatically and especially my mobility I feel as if my independence is being taken away. Thanks again for caring. MavisEllen
Hi MavisEllen,
Would say that unfortunately your GCA has been mis-managed almost from starting Pred. Too small an initial dose, headaches should have gone within a week or so (personal experience) and your tapering should have been slower both in time and dose. It can take up to 6 months sometimes for the inflammation caused by GCA to be completely controlled.
Some people get GCA, some get PMR, some get both, but you need significantly more Pred if you have GCA. And yes, some of the side effects are distressing, but they do reduce as your body gets acclimatised to the drug - but from what you describe yours hasn't had the easiest route to achieving that.
The high ESR readings may not be completely down to GCA as you have other things going on, but if you are on the correct level of Pred they should be in the teens or twenties not much higher.
Good luck.
Thank you for your response. I have never been on a higher dose than 40mg prednisolone daily since diagnosis. My GP constantly wants to reduce my prednisolone and it jumps down 10 mgs monthly and recently to reduce the side effects 5 mgs fortnightly but since February 24th I have only had 16 days without a severe headache like an invisible hairband temple to temple and a feeling of pressure by each ear. As the ESR results reduced so did the pred. Then when ESR shot up again, the Dr. increased the pred again. Up or down any change makes me feel 'strange' as if spaced out. Thank you for your concern.
You may feel your doctor is on top of things but I'm doubtful myself. To allow a patient to get into a yoyo pattern as you are just causes problems. He is reducing the dose not tapering the dose - and that in itself is causing problems. Plus the GCA (if that is what it is) is still active - and that is why symptoms return when you go to a lower dose.
You really should be referred.
Thanks again. I have to have my bloods checked next Wednesday and then return to see the GP to discuss the results and I will ask if I can be referred to a rheumatologist. Hopefully the cellulitis and accompanying 'burning pain' will start to subside soon as the swelling is reducing slightly.
Can feel for you, I have been on Pred for over a year and am still knocking into door frames and dropping everything more or less which is awkward as it is so painful to pick them up! Hope you get things sorted soon.
Thank you for your response. I hope that your health issues also get sorted soon. They certainly aren't much fun! Take care.
I think your GP is missing something. If you have these symptoms at 20mg pred it is pretty unlikely to be PMR as the starting dose for management and one that is more than enough to manage the PMR inflammation in most patients.
Lots of us have the clumsiness problem with PMR - so it may NOT be the pred. A lot of doctors are very keen to blame everything on pred - wrongly.
As the others have said - your leg sounds suspiciously like cellulitis and you probably weren't given a high enough dose at first to deal with your GCA. The dose was certainly reduced too much and too soon.
You need to see a sensible GP as an emergency - not next week.
Thank you for your response. I have seen my GP first thing Monday and have been commenced on treatment for the cellulitis with 2 grams daily of Flucloxacillin with the proviso that if it is not showing signs of improvement after 4 days then I will be admitted to the hospital for a course of intravenous antibiotics. I agree that the combination of health issues that I have are not helping any one of them to resolve/recover. I feel as if I am on a crazy merry go round with the only thing remaining constant....pain. I have progressed from one 2.5 mg tablet of Bisoprolol to manage my blood pressure - which it was doing successfully - to 16 tablets a day with each one presenting me with quite unpleasant side effects. I am determined to overcome the challenges and will try my best to resume a more 'normal' life again. I feel as if someone is pulling the rug out from under me as I find I can do less and less. I am a usually active person and now cannot even walk our little dog and need my husband as a chauffeur and to chaperone me everywhere. I hate it with a passion as I like to be independent. Thanks again for your input. MavisEllen
You poor thing sounds awful..when i was on pred..i walked around feeling slightly dizzy..it does mess with your eyes and coming off it makes you feel totally weird..like the top off your head was missing..id have to keep lying down.iv been on it so many times for chest inf as im asthmatic and for my psa..psoratic arthritus..it works but the side effects are horrible.. hang in there it will get better...xx
Thank you for responding. I feel at the moment like a hamster caught in one of those never ending running wheels! I have been feeling very giddy and have had to save myself from falling a few times, once at the top of the stairs. Hence the DR. has now said that I should not go out alone. I have been diagnosed with GCA, PMR, a special kind of recurrent, in my case non-stop shingles, age related macular degeneration (dry) and since seventeen I am now nearly 72 hemiplegic migraine. Muscle cramps have been increasing in length and strength for several years now most nights 2 -5 hours and several spasms in the day which is new. At times I feel as if I can't win but I do not give in easily. Thanks again for your comment. MavisEllen
God love you..it is horrible..i hope it gets better for you soon....xxxx
Another website you may find helpful is Vasculitis UK - it sounds like your GCA is a bit complicated- have you seen a Rheumatologist?
Thank you I will check it out.
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