Giant cell relapse?
Posted , 9 users are following.
Hi. I wonder if you may advise me on my problem with GCA.
I was diagnosed with prm and giant cell 4 years ago. I have only normal blood markers so make my condition really hard to monitor. The rheumy goes my how I feel and a positive ultrasound for gca plus and 72 hour to response to prednisolone.
I haven't had any gca for two years but big problems reducing the pred dispite reducing really slow.
Within the last month which I got down to 1mg pain and stiffness was dreadful I starded to get a stabbing pain along my artery outside my ear up to the temple, not continuous but it worries me plus I have had tenderness of the scalp and thickness under the temple vain.
The problem is that I don't know if it is giant cell. I spoke to the rheumy nurse as I cannot speak or see my rheumy doctor. She relays my problem and it is all diagnosed over the phone.
'increase steriod to 20mg or 30mg if still having headache go to eye clinic if having visual disturbances' Can someone advise me? Does this sound like gca? I cannot get face to face advise and feel I am not getting much help. Thank for any advise I really need it! Jenny X
0 likes, 12 replies
mary19068 jenny90481
Posted
Hi jenny90481
I think you should book an appointment with your doctor and request he/she re-refer you to a rheumatologist. You can't get a diagnosis over the phone and you can't make assumptions where GCA is concerned. Make an appointment asap.....keep us posted kind thoughts and wishes.....
nick67069 jenny90481
Posted
if you suspect GCA and 30 mg is not helping, rather then wait for a rheumi appointment, it might be prudent to go to emergency at hospital. GCA complications can lead to permanent blindness, why risk such a serious damage? Let them sort out things.
Vicki200252 nick67069
Posted
opthomologist told me , not to hesitate coming back if I my blurry vision got any worse or I was worried about anything as rather be safe than sorry as you can go blind very quickly.
you are so right Nick.
Vicki
EileenH jenny90481
Posted
There are many people who need a low dose of pred for a long time to keep the symptoms at bay - and you have to identify that dose. You say you got to 1mg - but where did you last have no problems? If you were fine at 2mg then, in the absence of sense from your rheumatologist, why not try 5mg for a few days and see if that is enough to relieve the pain? If not try 7.5mg or so. I see no need for a return to 20 or 30mg if less will do the trick and so that is what I would try. The pain and stiffness is a sign your autoimmune disorder is still active and you need more pred. How much more is something you will have to find out.
mary19068 EileenH
Posted
Hi EileenH
As you probably already know i have been off pred for approx 18 months and doing ok. I have often wondered why rheumys or doctors do not work upwards with pred. For example starting with say 5mg for a week or more see if pain goes, if not up it to 6mg for week or more see if pain goes, if not up it again to 7mg and so on. It could work out for some patients that the pain will ease off at 6, 7 or 8mg and would not have to go any further and could possibly only take say 4-5 weeks depending on individual case...as opposed to starting on 15mg and reducing down by 0.5mg or 1mg per month to get to the right dosage to ease the pain, which could take quite a while, and being troubled by side effects in the progress, but going up it would only take 4- 5 weeks for the pain to go depending on indivdual case and to get to the dose that works for the individual....then it would not take so long to taper off it. It took me from 15mg (going up and down a number of times) 12-14 months when it could have been a shorter tapering time and perhaps avoiding some of the many side effects i endured. Obviously a different case scenario with GCA.....what say you?🤔🤔🙄
jenny90481 EileenH
Posted
Hi Eileen.
Thank you for your reply.
Really good advise. I have gone up to 20mg on rheumys advise and thought this was really to big a jump.
I don't feel very good on this amount (makes me feel mentally bad). Hate the blooming stuff!
Felt ok coming down from 10mg to 5mg slowly then started to get pmr problems again. I knew it hadn't gone away but didnt get any support or advise from medical professionals so d.i.y myself nearly off them and wham! full blow pmr and maybe gca..
Now I really back to four years ago (with knobs on)!
Could you tell me please I have only been taking 20mgs for a few days can I just try a much smaller amount or am I stuck on reducing scale over many months?
Would 10mgs or less cover my autoimmune gca?
Thank you.
EileenH mary19068
Posted
Because that way round actually exposes most patients to more pred without benefit. It takes at least 10mg to achieve a half decent result at the start and while a lot of patients respond to 15mg they don't often to less. The existing accumulated inflammation needs to be cleared out too - I responded well to 15mg but it was months before all the bursitis was cleared out.
If you only need a low dose to manage it you will taper easily down to below 10mg anyway. The people who need more might struggle for a long time if you worked upwards. You only need to reduce at such small steps if you try 2.5mg the first time and have real problems. The first reductions steps to try are 15/12.5/10mg and see if it works. If it does - great! If not - then try smaller steps.
EileenH jenny90481
Posted
You can drop back to a lower dose if you have only been on a higher dose for up to a week - but if it is GCA you MAY need more, but it is impossible to say without trying. Has the 20mg helped a lot? If so, maybe try 15mg for a few days and see how you go? Does the rheumy think it might be GCA? You need the dose that relieves the symptoms and then it SHOULD be enough.
mary19068 EileenH
Posted
Hi EileenH
Thank you for your reply. I have noted your comments and they do make sense. I just thought that going up to begin with would reduce the amount of pred. We live and learn...thanks again....
EileenH mary19068
Posted
It may work for some people - but it may also waste a lot of time. Let's face it - it is mostly trial and error!!!!!
mary19068 EileenH
Posted
Hi EileenH
Yes, i see where your coming from, for some individuals it may only take a few weeks to be rid of pain going from say 5mg to maybe 7mg in say 3 - 4 weeks with hardly any side effects at all. Going from 15mg down to say 7mg by 0.5mg or 1mg per month could take 6 months lmg or 12 months 0.5mg and pain return at 6mg, and going through many side effects along the way. As you say could work for some. Just a thought and a theory that has always puzzled me🤔.....thanks for your input...👍
Vicki200252 jenny90481
Posted
Hi Jenny , I don't know a lot about anything yet I have only been diagnosed with pmr 3months ago.
What I do know is I was worried about GCA and my doctor sent me to a optomologist and I had extensive eye tests it took 2 hours but they can tell you if they think you have GCA on the day of appointment.
Vicki