GCA - reaction to Pred reduction?

[Frewen1]

Hello, I hope everyone has had a Christmas thus far in the range of "perfectly alright" to "wonderful".

I just wondered: started Pred treatment in mid August after diagnosis at 60mg, am now (for the past two weeks) down to 12.5; when I get to 10mg, the plan is to reduce by 1mg per month. However : leaving aside the palpable negative effects of the steroids (and the other drugs I'm given to combat those side effects), I'm definitely feeling worse since lowering the dose to 12.5; I'm more shaky, breathless (I have aorta and temporal GCA) and there's a pressure over my forehead. All this was there before, somewhat, but now it's more intrusive. Learning by numbers, as I mentioned before, (!) I now presume that these ill effects I'm feeling are in fact the GCA working away, not the effects of Pred, because they've increased since lowering. Would I be right? Apologies if this seems a ridiculously naive question. Not due to see my consultant until the end of January - am I safe until then, do you think, or should I call her? Sorry to bother if it's something and nothing...

[DorsetLady PMRGCAuk volunteer]

You need to contact Rheumy - and preferably back to 15mg ASAP. You've gone below level of Pred you need - and you need to get illness back under control.

You are not reducing relentlessly to zero as some doctors think - you are reducing to find the lowest level that gives you same relief as original dose.

With GCA your illness is still very active in the first 6 months.

[PMRpro Ambassador]

Just want to say the DL has already said what I would say. You have overshot the dose you need for now.

Prof Dasgupta and Imperial College did a study that found GCA was still active after 6 months on high dose pred - that is above 20mg. To have got from 60 to 12.5mg since August is incredibly fast and you have been lucky so far.

Certainly not a naive question - if anyone is naive it is your doctor who should be keeping a much closer eye on you when reducing at that rate. And should have warned you and provided a safety net.

The taper here:

rcpe.ac.uk/sites/default/fi...

is more realistic. After 5 months on that you would have got to 20mg - and that is a big difference in the context of GCA. Some people wouldn't have managed it even so,

[SnazzyD]

Don’t want to be negative but having been diagnosed in only in August, I’d be more inclined to say this is GCA, especially as this all feels familiar. Only 4 months and 12.5mg I’d be calling someone to consider upping the dose.

[jinasc]

Only add one thing to the above replies, if you cannot get hold of your Rheumy, then off to A&E.

[Frewen1]

Thanks so much everyone - I shall call the hospital tomorrow and try to get hold of her...

[Hidden in reply to Frewen1]

I hope you get sorted as GCA is such a frightening disease due to the loss of sight that can happen. If you do decide to go back higher. I personally would go back to 20 mg and reduce by 2 mg per month. Once you reach 10 mg try taking 10 mg one day and 9 mg the next for the whole of that month and continue this regime until you reach the end. This is what my rheumy recommended I do. So the 1 Jan will see me on 9mg then 8mg for that month. However, I think I will take the advise of DL and reduce even more slowly and reduce by 0.5mg. I know it will take longer but already I'm experiencing pains in my upper arms, so PMR is lurking. I had GCA too, or rather have GCA and really don't want to aggravate that by reducing too quickly. The ladies on this forum are all just brill and so very knowledgeable.

Best of luck

Anne

[Frewen1 in reply to Hidden]

Anne, thank you so much for that comprehensive reply. Yes, indeed they are, quite brilliant. I’ll put your suggestions to my Rheumatologist when I get hold of her - although some people seem to make their own decisions? Too much of a novice to take the law into my own hands just yet... thank you, Karen

[Hidden in reply to Frewen1]

Don't be frightened, these ladies have years of experience with both Polymyalgia and Giant Cell Arteritis. My doc had no clue I had PMR during the Summer last year. He was treating me for osteoarthritis....even prescribing morphine for my pain. Eventually, gave up and paid privately to see a GP, who gave me extensive blood tests. When they came back my CRP was running at 515....way too high. She recommended I see the Rheumatologist that works at the private hospital, which I did two weeks later. Another load of blood tests, chest X-ray, urine sample, BP, etc etc. He diagnosed PMR. Started me on the usual does of 15mg, reducing by 5 mg every two weeks, which in retrospect again is too quick a reduction, as it was proved, as by the time I reached 8 mg the GCA kicked in. Headaches, top back teeth ached, painful jaw and tender head. He then put me on 40 mg, again reducing too quickly by 10 mg two weekly. I must say though I've only had one hiccup during this taper and returned to 12.5 mg for a month. Monthly reductions seem to be working for me. I have to be careful as I only have the sight in my right eye (not down to GCA but bacterial meningitis) so I get extremely anxious when I get GCA symptoms.

Anne

[Frewen1 in reply to Hidden]

Golly, what a lot you’ve been through. Yes, the sight situation is a worry... very aware of my current blurred vision,don’t have much confidence that it will come back as it was.... Karen

[DorsetLady PMRGCAuk volunteer in reply to Frewen1]

Some doctors are happy for their patients to make their own decisions (within reason) - others aren't....and that's understandable, at the end of the day - the doctor is the professional and is signing off the prescription.

However, most sensible ones will, when they consider the patient is knowledgeable enough about their own condition and it's fairly straightforward with no other medical conditions in the mix.

As my second, and more experience GP once said -"you know your body better than I do" - but I was a year and a bit into treatment.

[Frewen1 in reply to DorsetLady]

Well as neither hospital nor GP surgery appear to be open I may just do that, and follow the advice I’ve had here, increase up slightly until I can talk to someone... Kx

[PMRpro Ambassador in reply to Frewen1]

Then go to A&E if you feel any worse at all and especially if you develop specific GCA-type symptoms. If you were OK at 15mg then it is perfectly reasonable to go back to that at the very least.

[DorsetLady PMRGCAuk volunteer in reply to Frewen1]

agree with PMRpro - see below.

[AncientMariner]

Call your Rheumatologist. My reduction down has been far steadier than yours and even so I would get the odd niggle on the way down so knowing your warning signs with this condition is important as it's onset can be quite nuanced at first. When I came down to around 11mg the niggles turned into a constellation of shoulder pain, pressure in the temples, soreness in the scalp and then the real alarms went off when the vision in my remaining eye (lost sight in the other) began to become blurred and lose crispness. That sent me straight off to the Eye Hospital and I was on Methylprednisolone IV within hours so when things get to that point time is very much of the essence in avoiding permanent sight loss. Don't be shy of asking for assistance and know in future where you can go to get qualified walk in attention and TELL THEM it is GCA if it is an ordinary A+E as they may get side tracked to other hypothetical causes due to unfamiliarity with the condition, this distraction costs time and has been recorded as the cause of sight loss for newly presenting sufferers in the past.

[Frewen1 in reply to AncientMariner]

Thank you!

[AncientMariner in reply to Frewen1]

No worries, on that occasion the sight in that eye returned to the level it was beforehand because I acted quickly and there is a specialist A+E Eye Hospital within 9 miles of me that I knew how long it would take to get to. I was Assertive about it, as I have been through it before and lost the right eye and no way was I going blind, I ended up back on 40mg Prednisolone a day but rather that than the alternative because I will reduce again even wiser. You know what is happening to you and if you are getting anxious get yourself off to be seen, never delay if your sight is changing, don't ever think you are not worth their attention

[Frewen1 in reply to AncientMariner]

Well as I can’t get through to anyone, think I might put myself back to 15mg. Just saw in diary that I’m supposed to go to 10 on Friday! Won’t be doing that ...

[Hidden in reply to AncientMariner]

Well said

[CoziNess]

I can't help I'm afraid as I'm in the same situation as you. Treated in November with 40mg and now on 20mg but struggled to breathe and was shaky and my GCA symptoms returned. So I increased back to 25mg and am settling a bit after 3 days. Waiting until the doctors get back on Tuesday for advice.

I still haven't seen a rheumatologist either. They are the best ones to sort your medication it seems.

Caroline

[Frewen1 in reply to CoziNess]

Thanks for reply anyway, and hope you level off too. Karen

[Kafkaontheshore]

Hi there. I agree with others - too fast a taper. I started pred in September for GCA in aorta/carotid etc and can’t get below 20mgs. Feel awful on 20mgs, walking limited and need to rest often. I have blood tests every two weeks and when down to 20mgs my CRP is raised. I went back to 25mgs on Xmas day but still feel no better yet. Slow reduction seems to be the only way to do it for some of us/maybe everyone. Good luck with it 👍

[Frewen1 in reply to Kafkaontheshore]

Thanks Kafka...my fortnightly blood tests have suddenly reduced to one every month or more - but as I have learned from the experts here, the CRP marker is only part of the story, No idea what mine is at the moment... I do walk at least a couple of miles a day, and do a weekly oldies online ballet class, but a new thing for me is falling asleep in front of the tv, never done it before! Have put myself back to 15 mg, anyway. Thanks again. Karen

[weatherman69]

My husband has had GCA since July 2016, good mgt for a 1 1//2 years and then GP that did not understand GCA, that had us jump back up to 60mg 2x at a flare.......it was horrible. I am a nurse, and did alot of research and reread docs from a Rheumy of 2016. We learned that if he was under 25mg a day, we could give a additional 5mg for the day, and start the new dosage the next day. Usually within a hour to two hours, the headache, and visual disturbance, muscle painweakness went away. We found that the sooner he had no doubt that it was GCA, that it was much easier to treat and less likely to have to go up very far now. I so agree with DL about going up to 15mg. If you wait to long, you might find out that you have to go up alot further on your dosage. We had alot of that in the first couple of years! We recently, had a very stressful time with many deaths close to us, and my husband had to go back up to previous dosage. Symptoms came on fast, so we gave a extra 5mg for the day, and then the next day able to taper to the previous dosage in a day or two. His ESR and CRP were much better and he only lost a little on his Hemogloblin and Hemocrit. I dont know if anyone else has extreme anemiaa when there is a bad flare up. My husbands H/H will drop significantly if it is a bad flare. Anywho, do not be scared to go up to previous dosage!! it will save you from having to go up more in the end. Get to the doctor as soon as you can too.

We are so thankful to this group!! we have learned so much!! slow slow tapering is amazing! We are now doing the 5 week tapering slowly , 1mg at a time. It is working great!! and my husbands ESR and CRP are the best I have seen over the past 4 years, now for 3 months!! except for the stressful time. Even then, the ESR and CRP were lower then we thought we had a good handle on his GCA. Safety net!! discussing with your doc!! you cant replace your eyesight, and this age of Covid, it is hard to reach most docs. Good luck to you, slower taper is better!

[Frewen1 in reply to weatherman69]

Thanks so much for your comprehensive message - I discovered today that my Rheumy is away on leave until next week, can't get hold of GP surgery, so I've taken the advice and put myself back to 15mg. Feel the same today, but I guess body has to reset to the higher dose again before it responds. Shall keep a daily diary entry for my records. Many thanks, good luck to your husband, too.

[Doublef]

That seems a short time with large reductions it has taken me 6 weeks to get to 17.5. Good luck hope it goes well

[PMRpro Ambassador in reply to Doublef]

Did you notice this thread is over 3 years old?

[Doublef in reply to PMRpro]

No I. Keep doing that