Kevzara

[EngineerMatthew]

3rd Rheumy suggested this since I have such bad side effects from prednisone after 30 months. Anybody tried this $4300 stuff?

[PMRpro Ambassador]

I have just replied on the other thread where you asked.

Kevzara is another IL-6 inhibitor, similar to Actemra but specifically approved by the FDA for PMR rather than GCA - it isn't approved anywhere else besides the USA as yet, There are one or two on the forum on it but very recently so not much experience beyond the results of the clinical trials.

ard.bmj.com/content/81/Supp...

It isn't a large trial - Covid interfered with recruitment. And the report is a bit sparse on detail ...

[EngineerMatthew in reply to PMRpro]

Thanks, that was fast and much appreciated

[Paulagcl in reply to PMRpro]

I am taking it. So far no bad reaction from it at all. My dr said there's no reason to think it won't work, that given the way insurance companies work here, essentially the drugs are the same but insurance never approved Actemra for both, just for GCA. Of course it remains to be seen once further studies are done. Not all insurance pays for it, but if not, right now the drug company has programs for that and I am on one of them so it is not costing me anything.

[EngineerMatthew in reply to Paulagcl]

That what the Rheumy said also. The question I have is when do you expect to stop taking it?

[sdowney717]

I was able to get off prednisone by taking 12mg of methotrexate once a week and daily 2 pills of hydroxychloroquine. I was on prednisone since late February and was able to finally get down to 5 without the aforementioned drugs. I have not noticed any side effects from those.

Think it took at most 2 months to go to zero prednisone.

After starting those drugs, I quickly dropped by halves the pred I was taking week by week.

Been off it now a week.

So like 5 to 2.5 to 2 to 1 to 1/2 to zero. I think I was at 2.5 for couple weeks.

[EngineerMatthew in reply to sdowney717]

That is awesome. I was on 5mg of prednisone but now not taking anything. Just suffering. Had to quit my job. Tried to get short term disability but I they want me to pay $900 for a endurance test. Both me and my wife have zero income now. I am not giving anyone $900 for a test that has nothing to do with PMR or my ability to work as electrical engineer

[sdowney717 in reply to EngineerMatthew]

If you can see a rheumatologist, I am sure someone will prescribe that, and they are inexpensive common drugs. Won't hurt your wallet.

[EngineerMatthew in reply to sdowney717]

I have taken prednisone for over two years. I can’t stand the side effects any longer. If I get a flare up, I likely will have to take some but other than that just have to live with the pain in hands and shoulders, sometimes hips.

[PMRpro Ambassador in reply to sdowney717]

Please bear in mind that you are very unusual.

[sdowney717 in reply to PMRpro]

The doctor's idea, but I did insist on it when he mentioned those drugs whole heartedly. I had months earlier asked the PCP about it but he refused to prescribe what for me has been harmless drugs saying they were dangerous. I had read where it can be useful for PMR or I would not have asked the PCP back in March 2023. Rheumy asked me, how do you feel about trying methotrexate?

Example here

whatispolymyalgia.com/treat... Methotrexate is an immunosuppressant typically prescribed and combined with oral steroids or corticosteroids. It is effective in reducing joint inflammation in PMR.

So let's not hear how it only worked for me and any other such unusual things. If I am exceptional then I am very glad the doctor suggested it and it helped a lot. Since the rheumy did, he must also sometimes use those drugs for his other patients.

My PCP poohed on the meth idea sayng prednisone works so well, no need for dangerous methotrexate. And just take more and more insulin for your diabetes. More I read about pred side effects; more I disagree with his attitude. In my experience the pred vastly exceeds methotrexate side effects, but he was a hardxxx about it.

[PMRpro Ambassador in reply to sdowney717]

In the UK the GP cannot initiate any of those drugs - only the specialists. It really illustrates the lack of education for the non-rheumy specialists who care for patients in primary care. Any patient who is as complex as you should be under the care of relevant specialists.

There are faults in the arguments - PMR doesn't affect joints, yes, MTX reduces joint inflammation but in PMR it has a different role from in inflammatory arthritis.

For me, methotrexate was horrendous, it created adverse effects that are usually ascribed to pred - I have never experienced them with pred. PMR is a complex disorder that often requires specialist input if the PCP is out of their depth. Yours was.

[sdowney717]

connect.mayoclinic.org/disc...

Mayo clinic discussion using hydroxychloroquine for PMR. My own doctor said it works synergistically with other drugs. So take them all, the pred, meth, hydroxy to lower and eventually get off pred.

[PMRpro Ambassador in reply to sdowney717]

I've seen it before. If you read carefully you will see it is really discussing general use of hydroxy alongside pred and I am not disputing that it works in other disorders. There is one paper suggesting it is the best thing since sliced bread for PMR - but it is a very poor quality paper from one author who really is an outlier. The patient from Ann Arbour is also an outlier - diagnosed at 48 and with recurring PMR symptoms over 30 years which apparently respond to hydroxy would cast some doubt on exactly what it is she has.

There are a few drugs that work as steroid sparers in other conditions - but they rarely work in PMR. That isn't to say they NEVER work in PMR and whatever it is, you may strike lucky. However, without a controlled study, you cannot say "this drug works for PMR". Without that, the drug is not generally approved for use in that condition and funding may prove problematic or local hospital regulations may make its use impossible. No idea how it works in the USA but the vast majority of us are in countries with other models of funding.

[sdowney717]

pubmed.ncbi.nlm.nih.gov/873... And lists other info

NIH methotrexate study conclusion is good for PMR

Objective: Steroids are the only treatment of polymyalgia rheumatica (PMR). We report the effects of methotrexate (MTX) plus prednisone versus prednisone alone in PMR.

Methods: Twenty-four patients with recent onset PMR were studied in a randomized prospective study lasting one year. Patients were given MTX (MTX arm) 10 mg intramuscularly plus prednisone every week, or prednisone alone (Pred arm). After 6 months an attempt was made to stop prednisone, and to use the lowest possible dose over the next 6 months.

Results: At the 12th month, all patients were in clinical remission, acute phase reactants were in the normal range in both arms of the study, 6 patients were no longer taking steroids in the MTX arm versus 0/12 in the Pred arm, and the amount of prednisone in the 2 groups was statistically different (1.84 versus 3.2 g; p < 0.0001). In addition, bone mineral density was significantly decreased in the Pred arm, but not in the MTX arm.

Conclusion: The MTX regimen allowed the use of much less prednisone over one year to obtain full control of PMR with no loss of efficacy. It also allowed sparing of bone in elderly patients at increased risk of osteoporotic fractures.

[Chiqui1950 in reply to sdowney717]

The question is whether these patients who were able to stop using prednisone have also been able to stop using MTX----

[sdowney717 in reply to Chiqui1950]

I just saw the Rheumy today asked about continuing Methotrexate and Hydroxychloroquine. Said I could stop taking and see how I react, continue till next visit in 3 months, or taper slowly and see how I react. I decided for now to continue as is. But in a couple weeks, I think I will reduce by one pill a week. Normal people do not take any of these drugs, and my goal is to be as normal as I can get. My CRP has dropped again now at 6.8

[sdowney717]

Another study confirms Meth reduces need of prednisone even to not needing any. Adverse reactions were not significantly different between the 2 groups. No one knows if a person can tolerate methotrexate till they are taking it, but seems you're an unusual case if you cannot.

aafp.org/pubs/afp/issues/20...

At the end of the study, 32 patients (89 percent) in the methotrexate group and 30 (83 percent) in the placebo group were available for evaluation. More patients in the methotrexate group were free of steroids after 76 weeks than in the placebo group, even when the worst-case scenario was assumed for those who dropped out. The efficacy of methotrexate was clear after 48 weeks, and the methotrexate patients also had significantly fewer flare-ups. Adverse reactions were not significantly different between the two trial groups.

The authors conclude that using prednisone and methotrexate together to treat polymyalgia rheumatica can decrease the number of flare-ups and reduce the total dosage of prednisone required to achieve and maintain remission. Considering the potential adverse effects of long-term prednisone therapy, this would be advantageous to all patients, especially those who cannot tolerate high doses of prednisone. Further studies are needed to determine whether methotrexate is effective as an induction therapy for polymyalgia rheumatica, and whether it can lower the initial dose of prednisone needed for treatment and control.

[PMRpro Ambassador in reply to sdowney717]

"seems you're an unusual case if you cannot."

In one study on RA patients it was established that in fact about 1 in 3 patients must discontinue MTX because of intolerable adverse effects - in contrast with the generally held belief amongst rheumies that it is acceptable to almost all.

[Hisue in reply to PMRpro]

Mtx & Plaquinel effected my mental & physical health adversely & did nothing to relieve my RA. The 2 rheumatologists who prescribed these meds, acted like I was imagining the side effects. Prednisone caused high anxiety (pacing), insomnia & paranoia & I was refused Rx for Valium to calm me "because it's addictive".😵‍💫

My GP found my cholesterol was elevating (wanted to prescribe statin) & attributed it to diet-I read the product information (PI) & it is a major side effect of the Rinvoq that I take daily. 😵‍💫

[PMRpro Ambassador in reply to Hisue]

I forgot to mention the third who stop MTX because it does nothing for them!! So effectively only 1 in 3 do well on MTX - not quite what they tell us is it!!

[Hisue in reply to PMRpro]

Thx for posting the scientific data. I really appreciate it.

[Kberly]

I took it but it didn’t do anything for me. The word on the street is that it works for some but not for others🤷🏼‍♀️. It’s a low risk trial though. Look into Kevzara insurance assistance from your Rheum— covers the cost.

[EngineerMatthew in reply to Kberly]

That’s what he said. My guess is this stuff is long term, then they own you

[Kberly]

My Rheum said that it takes 2-3 months to see results. I was on it for 3 months but nothing.

[EngineerMatthew in reply to Kberly]

Well I try to keep an open mind but the drugs being offered to my friend with terminal cancer may have made others live a few months longer if you consider that living. Please keep me posted on side effects, particularly upper respiratory infections which is why I dumped prednisone.

[Kuipersr2]

Just started Kevzara. My rheumatologist strongly encouraged it. Been on prednisone 15 months and Hydroxychloroquine 7 months. Will be on my third injection next week. Too early to report any benefits or side effects. Kevzara approved me for their co-pay assistance program so nothing out of pocket at this time. $15,000 annual coverage. Good luck!

[EngineerMatthew in reply to Kuipersr2]

7 months and you can’t tell???

Sounds like snake oil

[PMRpro Ambassador in reply to EngineerMatthew]

The 7 months was hydroxychloroquine. She has had only 3 injections of Kevzara.

[EngineerMatthew in reply to PMRpro]

Ah, I had been taking prednisone and HCQ for 18months

10mg of prednisone works

5mg I am prescribed does not even with HCQ

3 injections and can’t tell? Within 24hrs of first prednisone I was able to dance when the day before I could hardly walk

[PMRpro Ambassador in reply to EngineerMatthew]

Biologics don't work the same as pred. You cannot equate them. They take time to build up their effect. Some people don't get an instant result with pred either - it depends on the person and how much accumulated inflammation there is in the body.

[EngineerMatthew in reply to PMRpro]

Thanks

[Kuipersr2 in reply to EngineerMatthew]

I’m talking about the Kevzara. Down to 4 mg of prednisone.

[Kafkaontheshore]

Hi. I have been taking this for 10 months for GCA (large vessel vasculitis type). Previously tried methotrexate and Tocilizumab along with prednisone. Tocilizumab worked well but only available for one year in England. Sarilumab, until recently, had been working well for me. Felt great over summer, best I’ve been since Tox stopped. Less well now and awaiting investigations. Might be something else causing current problems.

I’ve had no side effects from Sarilumab and all blood tests good. Hope this helps and good luck to you 😀

[sdowney717]

All you can do is try a drug and see how you react. This forum has some personal info on working - not working, but the results are not conclusive proving this or that as the sample is invalid and biased. Not everyone in the world posts their experience here do they. Another consideration is, are more people likely to post here if their PMR drug trial experience is poor so they seek out support elsewhere from their doctors.

[EngineerMatthew in reply to sdowney717]

I just want proof it worked for somebody, anybody and have zero confidence in FDA