Alternative to Prednisone for PMR - Actemra (tocilizumab) Review for Polymyalgia Rheumatica

#PMR #PrednisoneAlternatives #prednisone
Tocilizumab (Actemra) is a potential alternative treatment for people with polymyalgia rheumatica (PMR) looking to reduce or possibly discontinue prednisone use. A 24-week trial revealed a 49% success rate for patients who received six doses of Actemra over four weeks, although the treatment carries an increased risk of infection, similar to that of a placebo. Surveys indicated minimal difference in quality-of-life for those who received the treatment, suggesting that it may not necessarily be worth taking. Alternatives such as hydroxychloroquine and immunosuppressants may be helpful, and a prednisone checklist can be utilized to effectively manage side effects.
Chapters:
00:00-07:43 - Weighing the Alternatives: Should PMR Patients Consider Tocilizumab (Actemra)?
07:45-09:36 -
Unlocking the Benefits of Actemra and Counteracting the Side Effects of Prednisone: A Guide from Your Prednisone Pharmacist
Key Takeaways:
1. Quality of life surveys indicate the benefits of Actemra may not be worth taking.
2. Acterma is an alternative to prednisone that is more costly.
3. There is no single best solution to replace prednisone.
4. Prednisone may cause side effects that can be difficult to handle.
5. Hydroxychloroquine and other immunosuppressants may be useful for people with PMR.
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[@noreenprice6816]

Its not the doctors that do the research, its the drug companies that decide were the profits are

[@mikem8246]

All the information you share is appreciated. I was diagnosed with PMR approximately 15 years ago. I took prednisone for more than 12 of those years. When Actemra was tried, I was able to get off prednisone. I would have personal experience with Actemra which is very positive. These decisions are very difficult but I have no regrets about taking Actemra because I have been off prednisone for 3 years. My rheumatologists says I'm "better off" being on Actemra. I had no desire to take prednisone for the rest of my life. It would be nice to not need any medication but so far, I'd rather be on Actemra and not take prednisone.

[@gizmosworld5855]

I’m glad it worked for you. Please know I’m being respectful. If you do some search, you’ll find some disturbing information about this drug. It’s caused a lot of harm & it hid information. Here’s something disturbing. I looked up something I found a few years ago & today I haven’t been able to find it. Actamera was given a black box several years ago.

[@juliamilford1979]

I have been on pred for 18 months. Thankfully was able to go from 20 to 10 to 5mg over the last 6 months. I have minimal pain on 5mg but cannot cut it completely, one missed dose = 3 days misery. On this low dose by eating sensibly and exercising daily the osteo is really not an issue, I had pre-existing osteo diagnosed 20 yrs before the PMR and it just stays the same. For me the expense and inconvenience of having to go for infusions just is not worth it, especially as there is only a 50% chance of success and a very real chance of nasty side effects. Happy to take 5mg pred daily for the rest of my life! I am extremely healthy otherwise, never get colds or flu or any infections.

[@zootybeano]

Me too! I8 months. I like my liver and kidneys working. I really hate drugs because I only weigh 100#. I'm struggling on 3.5 now after 18months of PMR. No rheumatologists take PMR patients in our rural area

[@juliamilford1979]

@@zootybeano I am in a remote rural area too, thank goodness for youtube! there are so many channels but the one I found most helpful is www.youtube.com/@ConnectedRheumatology I recently started taking L-Theanine which is a tea derivative if you hadn't heard of it. Best relief for stress I have ever found. No sedative or tranquiliser effect, no nasty side effects, best description is that is produces "calm focus" which it truly does. Also promotes healthy sleep. Available everywhere and not hellishly expensive. Wishing you health and strength!

[@alangardner8596]

I found another alternative, it was changing my diet and I abandoned vegetable oils, ultra processed food, sugar and cut down on carbohydrates. I also added olive oil to my diet and reduced the amount of foods containing lectins. In other words I began to look after my gut.

[@PrednisonePharmacist]

That’s fantastic! Those are great choices for anyone prescribed prednisone to reduce inflammation naturally!

[@Grain-FreeInsights-wo1qo]

Great post. I, too, believe in your diet. Did you know you can kill lectins in legumes by pressure cooking?

[@alangardner8596]

@@Grain-FreeInsights-wo1qo Yes I knew that but don't have one.

[@Grain-FreeInsights-wo1qo]

If you get one, get an Instant Pot 6 quart. It's safe. Even for me! LOL! @@alangardner8596

[@dyannnew4603]

Sharing with the PMR group on FB - you are the best!

[@PrednisonePharmacist]

Awesome! Thank you!

[@michaelbressette2599]

I am in a PMR group on Facebook, its been a blessing to have such support every day while I struggle without Prednisone & wait on a new Doctor to assist me.

[@higuoy]

The age thing is a farce. Symptoms started at 46, finally diagnosed age 49. I believe mine was turned on by mold hypersensitivity, by my toxin bucket overloaded. Couldn't lift my arms over my head, neck and groin pain too. Pred helped within 3hrs! Failed taper 2 times. Found Palmitoylethanolamide(PEA). It worked for me plus diet low carb low sugar.

[@higuoy]

www.ncbi.nlm.nih.gov/pmc/articles/PMC8157570/

[@dianagomez9875]

My rheumatologist prescribed Actemra infusions once a month. My moon face and most weight gain is gone. Pain is manageable.

[@joanjasper58]

Your easy to understand and I am happy I found your channel, thank u this gives me so hope.

[@PrednisonePharmacist]

You are so welcome! I’m glad to hear it was helpful. Hope is one of my core values, so I’m glad to hear it came across. 😊

[@Grain-FreeInsights-wo1qo]

I appreciate this video so much! Thank you, thank you, thank you!

[@PrednisonePharmacist]

You are so welcome!

[@susanoff8577]

Great info. I’m going to share with my doctor.

[@halinalewandowski8130]

Thank you Dr. Megan. Very informative.

[@davidjones8070]

Well you got me excited for about five minutes. I’m presently at 10 mg. and decreasing. All the wonderful pain has returned. I’ve always been healthy and active before all this started. I was into powerlifting and went from 225 to203. I lost most of the muscle that I worked hard for. Also my eye doctor sent me to a retina specialist and found I had pressure built up in my right eye that he says is caused by the taking of steroids. I have to find something different or live with my mornings filled with pain. Thanks for the information. I see my doctor next week and hope he has some suggestions on what to do next.

[@WeLetItHappen]

Did u take covid vaccine? It cause autoimmune disorders. Aspirin works for me

[@doop6769]

I'm in almost the exact same boat, except I lost 40lbs. Dealing with the same eye issue as well. Vision is blurry and can't be corrected. This all started for me shortly after receiving my second dose of the shingles vaccine.

[@liveyouryoga]

There is an even newer drug in clinical trial stage 3 Called Sarilumab for PMR. It’s not been approved for PMR yet. Trial outcomes have been very positive. It is also given as an injection. As with what was mentioned above, it appears to also have some nasty side effects too. Sticking with my methotrexate (15 mg) and tapering by 1/2 mg.

[@liveyouryoga]

I am down to 4.5 mg of prednisone.

[@liveyouryoga]

My inflammation markers are not always high so I wouldn’t qualify for the drug you mentioned, which here in Canada is more typically used for GCA to help taper.

[@PrednisonePharmacist]

True… it is in trials!

[@maril1379]

Great thumbs up

[@gizmosworld5855]

With all due respect Dr Megan, Oh **F** NO!!! May I contact you about this matter? I’m speaking from personal experience & information I found AFTER taking it. It’s too long for me to post here, & I can’t post links. In short….The side effects & history isn’t worth it.

[@PrednisonePharmacist]

Hi! There are lots of people with strong feelings about these treatments, right? I can’t even count the number of people who’d say that same level of fury about prednisone ruining their lives. So this is mostly for those so miserable on prednisone that they’re willing to try anything else. Feel free to contact me at prednisonepharmacist.com/contact-us/

[@annettewilford7568]

Its awful taking prednisone as I have m.e cfs😢

[@umxababa3545]

Se the side effect of actemra before, is very scaring

[@PrednisonePharmacist]

The side effects of prednisone can be even worse!

[@Fldavestone]

I have pmr age 64 am down to 10mg. Hoping to cut that this month.Have totally changed my diet to help.Missed a dose a couple weeks ago,not healed yet yowza.

[@susanoff8577]

I have no sound.

[@stefsytfavs1]

I’m 44 and have been diagnosed with this by my rheumatologist, I had everything but the age in this list. If this is the case what else could it be?

[@LorySmith949]

I rather just be put to sleep. Would never trust fda again after covid, theres too much disease, time to go. Let Al cone in , im out

[@susanoff8577]

Sound on now

[@rjf9418]

How does the drug work?

[@PrednisonePharmacist]

You can read this blog that I made with this topic here prednisonepharmacist.com/education/alternative-to-prednisone-for-pmr/

[@rjf9418]

@@PrednisonePharmacist Thank you.