Hello everyone, I am seeking some advice from my fellow sufferers. I have had GCA since Aug and tapering down on Pred which has been difficult. I am still working and have daily temple pain and by 6 pm find it difficult to chew. I am now down to 25 mg of pred and as the pain wasn't going the rheumy has put me on Methotrexate and now at 6 weeks with that. I am not sure if I have noticed a difference or it I am simply being stoic and in my usual fashion learning to cope. Liver blood tests on Meth seem to be ok at the moment.
For the last 4 - 6 weeks I experienced right Achilles heel pain after walking about 100 meters. This has persisted only to be joined by the left. i am wearing strong ankle supports to get through the days and simply walk. Three months ago the back of my hand flared up and I couldn't flex my fingers and an ultra sound showed inflation in the ligament sheath - the doctor said due to GCA. I has happened twice and then gone away again. Sadly my Achilles seem to be going worse and the doctor simply said use ice and ice gel. I don't have any other muscle issues in shoulders.
Any advice or insight would be great. I didnt fall or injure myself for this to happen.
thank you one and all.
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Fieldofdreams
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It COULD be due to the pred - it can cause tendonitis. It is pred you are on as opposed to methylprednisolone (Medrol)? Have you been given a quinolone antibiotic (the names end in "-oxacin") in the last year or so?
Have you seen an orthopaedic specialist? I had achilles tendonitis (caused by my GP mixing Medrol and flucoxacin) and spent 9 months on crutches and had a boot. Once the achilles is inflamed it becomes very delicate and the possibility of it rupturing with even a simple stumble is greatly increased so care is required.
I have to say, if it were me I'd be looking for another opinion - if you have GCA-type symptoms I think your rheumy should NOT be reducing your pred dose and while mtx MIGHT help, the pred dose still requires to be enough to manage the symptoms and I'd say your current dose isn't doing that.
I am so sorry that you ended up in a boot - I am wearing supports on both ankles at the moment. As you say, even one little twist ends in agony and I am directing a show at the moment which is quite active. I used to be a dancer so have quite a high pain threshold.
I am on prednisolone and no I haven't had quinolone antibiotic in the last year. I have had a flu and pneumonia jab to go onto methotrexate. I think you are right. I need a second opinion. I think the thing that the rhuemy cant get his head around is that my bloods are not that high and never have been but that ultra sound always shows haloing effect. currently ESR is 5 and CRP dash 1. MCV 97, lyphocytes 1.31, creatin between 83 and 73, ALT, 21 now 1.9. When I was diagnosed my ESR was 19. My temples simply hurt most of the time. I do get enough sleep and eating a great diet, but now I cant exercise. I havent seen an orthopedic specialist, but going to speak to my GP this week about a referral and if necessary to speed things up go private - I feel my body is just breaking down little by little and I am constantly living inside my head....
You can have GCA with blood markers that are in NORMAL RANGE - that can happen up to 1 in 5 patients. Your rheumy is being pigheaded - the imaging is far more reliable than his blood tests. If you can get down to 5 - 19 is VERY raised for you.
Ah yes - remember now. I honestly think you need to consider a trip to Chertsey and a private consultation with Dr Hughes. I say him because we know he is reliable and accessible. Or Southend to Dasgupta's fast-track. He also does private. It may not be GCA - but it sounds more like it than any other option.
As Snazzy says, with those symptoms alone most doctors would have you on high dose pred. I find the concept he's dismissing the imaging appalling - like the doctors who say an abnormal lab result is "lab error" even when the result is reproduced time and again as happened to a friend of mine with total immune dysfunction!
But do remember, if this IS still the GCA, and he makes you reduce further, your sight could still be at risk. And blind theatre directors are few and far between ...
Hi PMRpro, thank you again. Just to clarify the imaging, he did take notice of that at first but now seems not to be. It is 3 months since I have seen him, he wanted to see how the meth worked. How do I contact the doctors you suggested?
Wd i be able to ask for all my results to date? I have copies of letters sent to my doc but not all results going along.
Once I finish my current job in Glasgow I am going to seek that second opinion. I have a weeks holiday booked come 24th May and going to monitor what happens then. I took matters into my own hands. Increased my pred from 20 to 40. Felt much better after 3 days. Stayed there for 5 days and now back to 30.
If you presented with these symptoms you’d probably be put on 60mg or so of Pred. You are on the combined therapy but still getting these symptoms which suggest you are still getting inflammation and possibly the risks that come with it. I’d want a second opinion or an explanation as to why when there is little improvement the same reducing strategy is still being pursued.
It is possible that working at the same time is putting your body under too much strain to recover properly and perhaps plan a plan B may need to be considered. GCA is a serious condition.
Hi SnazzyD, thank you so much for your reply. I thin the thing that the rhuemy cant tget his head around is that my bloods are not that high and never have been but that ultra sound always shows halloing effect. currently ESR is 5 and CRP dash 1. MCV 97, lyphocytes 1.31, creatin between 83 and 73, ALT, 21 now 1.9. When I was diagnosed my ESR was 19. I had a biopsy but after 2 months on pred which i questioned at the time and shouldn't have had one. Seeing the specialist nurse re metho next Monday as working away till then. I know work may be a concern... if I have to give up this contract I lose my career and my income..., its a real juggling act and my current employer knows my condition and is being great. I had time off at Christmas and had a flare! Sods law. Really dont know what to do at the moment. My own GP has given me pregabolin which I think helps.
Even more reason for a second opinion because the current Rheumy doesn’t know or take notice of the fact that not all people with GCA have raised markers. Plus they are trying to ignore symptoms and the U/S result.
I lost my career overnight due to this, so I can imagine how you’d want to hang on. I’m a fan of having a plan B even if it’s unthinkable, so if forced, decisions are made less on the back foot.
Snazzy D i am so sorry you lost your career, that must have been devastating and I can emphasise as I am just holding on. Now this bloomin achillles problem is a nightmare. I dont have and cant think of a plan B. I have been in theatre and the arts all my life.... started singing, dancing and acting aged 5 and now i produce and direct.... as a director you dont retire and last year i just hit a sweet spot in my career that took 20 yrs. The only reason I ever thought and may have to give up would be to care for my parents who are getting on now. Sadly, I cant afford to retire financially.... ahg, this hideous disease that just keeps giving! Much love to you and huge thanks for sharing your journey. Without this forum I dont know what I would do. FOD x
Hi. Yes, prednisone does weaken the tendons, and I like you, had very bad pain in one Achilles. I just carried on as normal and it ruptured. 3 weeks in plaster and 7 in boot. It was a slow, healing process. I would advise you to go carefully, perhaps see a physio for gentle , stretching excs. Good luck. Sue
Gosh so sorry for your Achilles problem Sue. I am terrified of that happening; some days i can barely walk and frightened of falling or even moving quickly. I do gentle stretches but I think they are both inflamed. Seeing my GP next wk as working away this week. Thank you for your advice and confirming what I thought that it is the pred.
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