Still on 50 mg coz no rheumy.

[Alness]

Well i saw my doc yesterday re GCA and beig on such high steroids stil 50mg. He doesn’t want me to lower them until i grt rheumy appt. i rxpainef the clinic hsd can my appt fr 10th zseptembet but couldn’t give me another one yet but wil do as soon as they can. My doc very annoyed at this snd said he was going to wrte straight away and he was demanding i be seen at top of list now. WOW hes not a stroppy doc but was glad hes in my corner. He doesn’t want me to lower steroids yet snd said i need steroid lowering tabs as the steroids are damaging my body not least my bones. If i still hv a long wait for rheumy i will start to taper on my own. Slowly Thanku for listening R

[Alness]

Apparently only the Rheumy can originally prescribe steroid sparing drugs. GP not allowed but he can after rheumy instigates itt see all again at xmas no doubt when they get a rheumy xxx

[SheffieldJane]

You do need to be protected by high dose Pred just now, the inflammation is dangerous to your eyesight. 50 mgs is still a relatively modest start dose for GCA. I hope your doctor is successful in prioritising the allocation of an early specialist appointment for you. Steroid sparers are not as great as they sound. They have a world of side effects too. I would be happy to stick with Pred for the duration if possible.

[Alness in reply to SheffieldJane]

Thank you Sheffield Jane. I was on 60 mh for bout a week then he dropped mr bcoz i responded to 40mg but immediately got bad again so upped to 50mg. I should Hv said this is not my first flare but in past i tapered really quickly coz didn’t want the weight gain from steroids as i hv been on them for brittle asthma for over 30 yrs and they hv wrecked my body. However i wont play about with GCA or poly i also hv fibro. Can u tell me why u are against. Steroid sparing drugs at docs just told concerns about my bones on steroids im 67 would welcome others opinions thanku T c thanku R

[SheffieldJane in reply to Alness]

Anecdotes suggest that they don’t help much and they have the hair loss and weight gain amongst their symptoms/ side effects. They were designed more for other conditions I think. There will be members on the site who have found that they get past a sticking point dose of Pred. Using Methotrexate and similar and others who can’t tell if it helped and others who couldn’t tolerate them.My opinions are just that. I don’t personally want to add another complex drug to my symptom picture. I am quite reconciled to living with Pred. And managing the side effects as they arise. It has to be said that I have no experience of the high doses but would take them like a shot if I got GCA.

[Alness in reply to SheffieldJane]

Thanku for ur advice Sheffiels Jane

[DorsetLady PMRGCAuk volunteer in reply to Alness]

Hi,

I can understand you don’t want to be on steroids for too long at a high dose, but your GCA is not like your asthma, it doesn’t respond in the same way - a short sharp dose and then off the medication.

In GCA it’s only treating the inflammation caused not the underlying illness itself, nothing cures that, you just have to await until it goes into remission. But all tge time you have active GCA and inflammation is being produced you need the correct level of Pred to control it.

I think we question the steroid sparing drugs because in lots of people they don’t seem to be a great help, and as Jane says have side effects of their own. Actemra has only just be authorised to be used in UK so that still unknown really from a patients point of view.

Sometimes, better the devil you know!

You should be taking a VitD+Calcium supplement for bones - and maybe a Bisphosphonate if necessary.

[Alness in reply to DorsetLady]

I hv bn om metthatrrxate for my asthma and was losing my hsir. I dint really want to take another med either I’m on enough all ready . I am resigned to the steroids but my doc seemed to panic about it. Thst said the steroids hv raised my blood sugars a lot put my blood pressure up and aggravated my atrial fibrstion which all of these hv been caused originally by mega doses of steroids. For very long periods at a time i never get off them and the withdrawal is horrible .,Thanku for your help and advice it really helps me. I appreciate all of you who hv posted R

[SheffieldJane in reply to Alness]

I highly recommend the very slow tapering of Prednisalone that is outlined on this site. Just tap taper into the search box. It doesn’t have to be horrendous, when the time comes.

[DorsetLady PMRGCAuk volunteer in reply to Alness]

Yes unfortunately the doctor do seem to panic about steroids - more so than other medication. Your BP and sugars will rise initially, but as you reduce the dose of steroids they will come down as well.

I know you have a lot more going on than most of us, and I wish there were a magic answer, but unfortunately there isn’t. It’s a long slog and really steroids are the only way.

Take care.

[Hidden]

Hi, Don't worry too much about high dosage... I went from 40 to 60, then started an aggressive taper. I got down to 40 and FLARED! I had to go up to 80 (to get same relief 60 had previously provided!) and stayed there for quite awhile, before I started dropping by 5 mg every 30 days! ...be careful if you start tapering on your own! It's tricky and September 10th is only 16 days away. Good luck!

[Alness in reply to Hidden]

Thanku mamici1 r u on steroids sparing drugs too. R

[Hidden]

No... I'm only on Prednisolone; currently 30 mg, down from 80 mg.

[Alness in reply to Hidden]

Ok hope u manage on the lower dose and can keep tapering. How long hv u been being treated fot GC R

[Hidden in reply to Alness]

Oh sorry... I was diagnosed with GCA in November 2017, but was told I had probably had PMR for 2 + years prior to that, based on symptoms I exhibited. If they had diagnosed and treated the PMR, I may never have gotten GCA... but wouldda, shouldda, couldda!

Shit happens, right?

[PMRpro Ambassador]

"snd said i need steroid lowering tabs as the steroids are damaging my body not least my bones"

There are no "steroid lowering tabs" as he puts it - although some doctors think that methotrexate helps patients get to a lower dose of pred. You've already experienced the joys of THAT. How long have you been at 50mg? You probably had symptoms immediately because your body couldn't cope with such a large drop - 5mg would perhaps been easier on you and avoided the steroid withdrawal.

If he thinks you have GCA he should have requested an EMERGENCY appointment in the first place as he would for a patient with a suspected stroke or heart attack. Some hospitals have fast-track clinics where ?GCA patients are seen within 24 hours. And it means a telephone call usually - not writing, that gets lost in the pile of mail.

[Alness in reply to PMRpro]

I hv already been diagnosed by a rheumy i was sent to the hospital originally but bcoz of my health issues they refused to do the biopsy however when i saw the Rheumy hecsaid i had thickening on side of head caused by GC i hv i that come up like worms on the side of my head quite a lot and they are tender to touch. I think i hadGC for quite a while b4 diagnosis bcuz i was constantly on steroids. I thought it wss migraines . Im worried im taking up a lot of time on this site dont want to block others who need help. I hv found this site so helpful and given me more of a positive outlook although despite my health issues im not a negative person. Thanku for your helpful advice R

[PMRpro Ambassador in reply to Alness]

Never worry about how much time you think you are taking up - this site expands to fill the need It isn't like you being on the phone to a helpline so others can't get through.

There is always somebody around with time to help with "tea and sympathy" - though you will have to bring your own tea. There is almost always someone awake - with members in Australia, the UK and the USA/Canada.

[Alness in reply to PMRpro]

Thanku PMRpro I appreciate u saying that hope i too can help someone x