I saw a consultant rheumatologist early in the year and again in March (GCA diagnosed Nov 2016). He listened attentively + made notes, but then wanted me to start on methotrexate asap. This was when I was still on quite a high dose of pred. He thought I needed to reduce pred fast, because of steroid-induced diabetes, steroid myopathy, etc.
He said it was necessary, before Mtx, to have zolendronic acid infusion. I'd had a dexa scan in Jan - some osteopenia but no osteoporosis yet.
Not too bad.
After considering all available info, I decided not to have these extra treatments so soon, but to focus on reducing pred as best I could. This I've been managing reasonably well - now down to 9 - 8.5. But finding exercise difficult, which does worry me.
He didn't say "no point coming back", but didn't give me another appointment for 8 months. When that came up last week, I found I wasn't seeing him, but a v junior colleague. She was v nice and attentive, but . . .
I said I wasn't willing to have zolendronic acid, until I'd had another dexa scan to show how much deterioration was taking place. She thought that a good idea and went to confirm w the 'big cheese', but returned to say that repeat dexa scans are not allowed sooner than 18 months, so 'not for nearly a year'. Oh dear! How often are dexa scans allowed, usually? If done privately, would that be prohibitive?
During this year I had several GP appointments earlier on, but not for ages now. Monthly blood tests have become routine, but I make the appointments. Have had an occasional phone call in response. Medications are on repeat prescription. I'm due for a routine diabetes assessment and eye screening soon, but otherwise nobody ever examines me or asks me how I am. Feels like nobody's interested. Maybe that's par for the course?
A bit low today, and glad of this opportunity to get this off my chest.
PS: This was originally a reply to another post. Just to add to the general feeling of low-self-esteem and being of no consequence, I'll just add that the reason the original reply was so late, as always, is because I don't seem to get this newsletter until almost a day after everyone else. End of moan.
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BonnyQuine
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Depends where you are - and the argument should be that on pred the greatest amount of change in bone density happens in the first 3 months so it might be worth it. Under normal circumstances they wouldn't show any changes in such a short time - we aren't "normal"...
Where are you? BonnieQuine says east cost of Scotland but I'm sure you aren't now?????? Call it pred-head.
Southampton NHS offers private dexas for about £75 (innflation, used to be £55!). So do other places for rather higher charges.
I'm a bit mystified why you were to have zolendronic acid before you went onto mtx... Frankly, if you are down to a physiological dose and doing well - I wouldn't be considering mtx now. Never mind "exercising" - what CAN you do? Walking? I walk - that is the sum total of my "exercise".
Replies are posted days and sometimes even months after a post - doesn't matter how late, those of us who follow will see it.
PS - cheer up and consider a virtual hug to have been given xxxx
Though if I were in Rochdale I'd ask to be referred to Prof Mackie in Leeds, who I believe now works out of Otley.
Apart from quarterly blood test for monitoring diabetes I had nothing for years. I was even put on a daily injection with no training or explanation. With pred I tipped into insulin territory...now go to a diabetes clinic every three months and get proper info.
Seperately...they wanted to do a lumbar puncture on me a few years ago but I asked for less invasive investigative process. Waited 2 years for MRI. Some are just too sensitive to our criticisms/questions about what we will do with our bodies.
I think it is par for the course BonnieQuine. I practically manage myself now ( 19 months in) after a flurry of activity at the beginning. I prefer it that way really. I like to reduce at my own intuitive pace and I bring my side effects to the forum. I only see my GP for specific tests that I initiate - like the Adrenal one now because I cannot believe how exhausted I've become (7mgs).
I would have refused Methotrexate- there is no evidence that it would get me off Pred sooner - none!
DEXA scans tend to be every 2 years, the changes are really slow, thankfully. I am not taking a biophosphonate "just in case" nasty horrible things.My last bone scan was fine. There is doubts being expressed about them being the wonder drug that was first supposed, fractures etc.
The tests you are having are good ones to have.
Sorry you are having a low self esteem, blue day. Give yourself a treat, cuddle up in front of a nice film with a mug of hot chocolate. We all love you here.
Hi BonnyQuine, it's 4am. Can't sleep so I'm reading your post. Am thinking of you and sending a wee cuddle. I never see my doctor unless I make an appointment. You would think with this illness follow ups would be routine but don't seem to be. Hope you feel brighter soon. May
It sounds like a lot of us are self managing. I only see my GP if I make an appointment. I'm getting two monthly bloods now after seeing 'junior' rheumatologist - don't see consultant anymore! They never record the level of prednisolone I am on at the tests. I ask for a printed copy so I can keep my own record. Next rheumatology appointment in 8 months time. I'm on repeat prescriptions and nothing is ever said. I'm fairly happy with that as I have come to realise they don't have an awful lot of information to give me. I find out what I need to know on this site and then take that to my GP if I feel its important.
Hi BonnyQuine, I am almost 3 years into GCA now and am really self managing. I think rheumatology have forgotten about me...I'm sure I should have had an appointment last month. They told me, in Cheshire that Dexa scans are repeated 2-3 yearly. I had to ask 'firmly' for one after the 2 years as they wanted me to re start AA. I got the results from my GP. Never heard a thing from clinic!! (It was ok so no more AA for me)
I have tried mtx in the past but it really didn't agree with me.I think with the help from this forum I am quite happy to carry on as I am. I'm currently reducing to 8mg of pred and intend to stay at that over Christmas. You seem to be at a similar level with your pred so I'm not sure why you would need mtx now.
Tiredness is still a thing with me and I don't really exercise, apart from the odd walk but I have 2 flights of stairs in my house so that helps!!!
I've also just had the full gamut of blood tests done, arranged by my GP....no diabetes for me but a raised cholesterol which apparently is yet another delightful side effect of the pred.
This disease can make you feel very low because you just feel as though you aren't getting anywhere......but..as has been said many times before on here...it's not a race. Take your time, listen to your body and hopefully you will carry on managing ok. We are all interested in how you are!! I do hope you feel better soon. x
Thanks to all for your replies. We seem to have a lot in common, and I do find this very encouraging. Been off having various eye tests today, which have also been fairly encouraging - so spirits generally a bit lifted. Now, if it would just stop raining . . .
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