Steroid sparing drugs.: I have read some of the... - PMRGCAuk

PMRGCAuk

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Steroid sparing drugs.

Primarose profile image

I have read some of the posts from folk who are now taking steroid sparing drugs (immunosuppressants). I wonder how effective they are. Some of these these drugs have worst side effects than the pred.

Has anyone had complete success taking the steroid sparing drugs.

I can't find much information about these other drugs as steroid sparing so are the trials still in infancy or are the medics hoping they will work?

I took part in an NHS survey about a year ago, which, I believed was to help fellow GCA sufferers but it turned out to be whether or not tocilizumab would be helpful. An hour long survey is not enough evidence to prove that a drug will work surely.

27 Replies

Hi - I've tried several - Humira, Methotrexate, Sulfasalazine, Hydroxychloroquine etc. None worked for more than three months and most had no effect at all except for nasty side effects. However, I have been taking Kevsara since July - no side effects, and I seem to have a lot more energy. I'm starting the steroid drop tomorrow so am crossing fingers..

Primarose profile image
Primarose in reply to venezia1

Gosh, you've certainly tried a few meds. I had never heard of Kevsara so I looked it up. I hope it helps you, think you deserve some respite.

Good luck with your tapering.

venezia1 profile image
venezia1 in reply to Primarose

Thanks. My original consultant wanted me to have Actemra, but my new one said it had been superseded by Kevzara, which apparently is less likely to cause infections. I know it's very new.

Primarose profile image
Primarose in reply to venezia1

If the side effects are fewer then I'd say it was the better drug. When you are feeling ill you don't want to feel worse by the drugs, the bod can only take so much.

gifford7 profile image
gifford7 in reply to venezia1

re: Kevzara [sarilumab]

There is a Phase 3 trial by the FDA [US] in progress for treating GCA.

"Evaluation of Efficacy and Safety of Sarilumab in Patients With GCA"

clinicaltrials.gov/ct2/show...

ClinicalTrials.gov Identifier: NCT03600805

Recruitment Status : Recruiting

First Posted : July 26, 2018

Last Update Posted : October 11, 2018

venezia1 profile image
venezia1 in reply to gifford7

Is Kevzara not licenced in the US? If so, it seems we're ahead of the game in the UK, for once!

piglette profile image
piglette in reply to venezia1

Kevzara was approved in the US in May last year and in Europe in June last year.

gifford7 profile image
gifford7 in reply to venezia1

Kevzara is approved in the US for RA but not yet for GCA as its in Phase 3 Clinical Trial for GCA. However might be prescribed off label for GCA but drug insurance unlikely to apply. see: "WHAT IS KEVZARA?

KEVZARA® (sarilumab) is an injectable prescription medicine called an interleukin-6 (IL-6) receptor blocker. KEVZARA is used to treat adult patients with moderately to severely active rheumatoid arthritis (RA) after at least one other medicine called a disease-modifying antirheumatic drug (DMARD) has been used and did not work well or could not be tolerated." kevzara.com/#

gtate1914 profile image
gtate1914 in reply to venezia1

How long were you on methotrexate and how did it help you or not? I started up again on it but am having second thoughts...... my rheumy is very persistent about it and I caved in .... but It's track record is not impressive and I feel I am coming down with a virus whereas before I almost never caught anything.

venezia1 profile image
venezia1 in reply to gtate1914

I don't remember exactly - certainly a few months or a year. It had no certifiable results, just made me feel worse!

Hessie5 profile image
Hessie5 in reply to venezia1

Hi Venezia. Is this the same biologic as Sarilumab, I am set to take soon. Just wondered how you are coping?

venezia1 profile image
venezia1 in reply to Hessie5

Hi - see my later reply - sorry I missed this.

I don't like to take anything unnecessarily, so I was sceptical when prescribed Methotrexate. This was after a second flare of GCA when I reached 25 mg per day of pred. I must say that I think it has helped me with the tapering as I haven't flared since, and I don't seem to have suffered from any terrible side effects, unless you count my weird frizzy thinning hair. I saw my rheumy on Wednesday and I asked if I should drop the methotrexate and she said no, definitely continue. I'm now going to 12.5mg of pred per day and I'm supposed to reduce to 10 mg in a month. I'll see how it goes.

Primarose profile image
Primarose in reply to Marijo1951

I wish you luck and success. How long have you had GCA?

Jackoh profile image
Jackoh in reply to Primarose

Hi Primarose. My consultant favours Lefludomide over methotrexate and so I have been on this drug for just over a year. I haven't had any terrible side effects and it has certainly helped me to reduce whereas before I was struggling to get below 18 mg. I do have tendon problems in my left leg and foot but had those before starting the Lefludomide - I think as a result of the Pred.

Primarose profile image
Primarose in reply to Jackoh

That sounds promising Jackho. I have tendon problems in my wrist now, doctor thinks that it's red related.

Marijo1951 profile image
Marijo1951 in reply to Primarose

The GCA symptoms started in March last year and the PMR a couple of weeks later at the beginning of April. I was actually diagnosed on 31st July last year. Good luck to you too in this journey you didn't want to take!

Primarose profile image
Primarose in reply to Marijo1951

Thanks. It's nearly 2 years for me, I've only taken the pred, there didn't seem to be anything else on offer when I was diagnosed. Well there might have been but I it was never discussed.

I hope to be off the preds by December but wonder what damage the GCA has done to the arteries.

Marijo1951 profile image
Marijo1951 in reply to Primarose

I started on the methotrexate just after Christmas, when for the second time I'd had a big flare up of GCA symptoms on reducing to 25 mg of pred. I feel that it's helped, but can't help worrying sometimes that it's totally unnecessary and might leave me with further problems that I don't want, such as fatty liver. I just long for the time before last year when the only medication I took was the occasional pain killer.

Primarose profile image
Primarose in reply to Marijo1951

Oh gosh yes, the strongest thing I had was paracetamol.

I had a relapse at 10 mgs in August 2017, I went up to 12.5 but that didn't do it so I upped it to 15mgs. I had another episode at 10mgs again, this time 12.5 worked. Have been tapering ever since.

I assume that they monitor you closely with bloods tests etc.

Marijo1951 profile image
Marijo1951 in reply to Primarose

Yes, I go for blood tests at the beginning of each month and no alarms so far. I am aware that my dosage of methotrexate is tiny compared to somebody taking it as part of chemotherapy for cancer, but nevertheless I just hope I'm not taking it for nothing.

Primarose profile image
Primarose in reply to Marijo1951

I hope you are not. Too soon to know yet, fingers crossed!;-)

Marijo1951 profile image
Marijo1951 in reply to Primarose

Thank you...

I have been taking methotrexate for 2 years now and so far have had no side effects. I did think recently that it wasn’t doing anything, stopped taking it for 4 weeks and neck and shoulder pain started to come back. I am monitored. X

PMRpro profile image
PMRproAmbassador

"are the medics hoping they will work?"

Generally, yes, I think so. There were a few studies some years ago with methotrexate that all found something different: if worked, it didn't work, they didn't know. While it did appear to allow a lower total dose of pred it took a year to see a difference in dose and the long term effects attributed to pred were no different. Leflunomide seems more effective in a single study - but it wasn't agreed that it was worth recommending. It gas some scary side effects including neuropathy,

I tried methotrexate for 4 weeks - I felt so ill and tired I stopped. My hair was falling out in chunks!

I have both PMR (8 yrs) and GCA (2yrs). Been on Actemra 1 year. No side effects. Down to 1/2mg Pred (fingers crossed to come off this week). Good energy, no PMR or GCA symptoms. Very pleased with it.

I have both PMR (8 yrs) and GCA (2yrs). Been on Actemra 1 year. No side effects. Down to 1/2mg Pred (fingers crossed to come off this week). Good energy, no PMR or GCA symptoms. Very pleased with it.

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