I was reading an article about Dan Patrick, the well know former ESPN broadcaster, who now has his own show (The Dan Patrick Show). On CBS. Dan announced that he had been diagnosed w/ PMR & had been dealing w/ it for 7 years. He said he had tried prednisone but had problems including suicidal thoughts, mood swings & depression so he quit taking it recently & according to Dan, started treatments w/ the only other thing that worked which was chemo therapy. He gets an IV w/ the milder Acterma shot (A milder form of chemo). He said he gets one IV a month & stays pain free & was halfway thru the 10 treatment process. He stated that he had also experienced bad side effects, including bad memory loss. No hair loss however. But one thing he said that really caught my attention is that the Drs. are telling him once he is done w/ the treatments he will be good to go. I’m not sure what they mean by that since there is no known cure. I asked my Rheumatologist about it & he said there is NO cure & that he would not recommend chemo for PMR. I myself would prefer taking prednisone vs chemo. But just curious if anyone else has heard of chemo treatments for PMR? I will try to attach the article for your reading. This link should take you to the article.
Chemo Therapy For PMR: I was reading an article... - PMRGCAuk
Chemo Therapy For PMR
Once you click the link a window will open w/ the full link. Click on that full link in order to read the article.
Actemra is used for people with rheumatoid arthritis and now also for people with GCA there are trials for PMR too. There have been several posts about it on this forum. There are several chemo drugs used for PMR/GCA, such as Methotrexate. There was a bit of a panic a year or two ago that Actemra was causing deaths.
Yep, I hope you are able to pull up the article. It’s very interesting indeed.
You can check for posts on the right hand side of the page. The most recent one was healthunlocked.com/pmrgcauk...
If you look at the date there were a couple of discussions about this article and the treatment.
In fact here you are...
healthunlocked.com/pmrgcauk...
And with his admitted reliance on alcohol I am surprised he take actemra.
consumersafetyguide.com/dru...
I think he quit drinking.
Btw I started on 20mg a day of prednisone, I am down to 10mg now FINALLY have been on 10 for nearly 2 months. I am to start on 7.5mg beginning tomorrow. Wish me luck & I will keep you posted....
The general advice is to only decrease Pred. by 10% a month. So dropping from 10 to 7.5 = 25% might be very difficult.
I was just going to say what Q-owl has already explained, l’d suggest from 10mg->9mg as that 10% then from there consider going down in 0.5mg drops. As recommended by my previous Rheumatologist.
MrsN
Never heard of prednisone drops. My Rheumatologist prescribed me 1mg tablets when he 1st asked me to cut from 10 to 9mg. But according to Walgreens pharmacy 1mg prednisone does not exist. I will inquire about the drops but YUCK!! I can imagine how nasty they must taste. I think I’d rather do the 2.5mg pill reduction lol....
I have a stockpile of 1 mg of prednisone. I'm not sure where you are at, but here in Iowa, we have boatloads.
Yes, you should be able to get 1 mg. easily. I rely on them as I decrease. I’m currently on 4.5 mg daily. I’m in Massachusetts. Go somewhere other than Walgreen if you can.
I live in Pennsylvania & I get 1 mg. prednisone at Rite Aid.
From 10mg all experts recommend not more than 1mg at a time!
1mg prednisone tablets are not available in the US. Or @ least that’s what Walgreens told me. My Rheumatologist actually prescribed me 1mg but it could not be filled....
“Applies to the following strengths: 2.5 mg; 5 mg; 20 mg; 10 mg; 50 mg; 1 mg; 5 mg/mL; 5 mg/5 mL; 2 mg”
The Box in the article appears to imply they do produce 1mg
However, if you can get 2.5mg ‘uncoated’ ie plain tablets you could split them into 1.25mg which you may find helpful.
drugs.com/price-guide/predn...
You might have to search around, or buy from an online pharmacy. But they exist. And I have come across US members of the communities who use them.
This is why a lot of people either get pill cutters to use at home , it if they have a friendly Chemist they will do it for them.
Nasty tasting it might be , but it's nothing like the nasty taste and overall feeling you have if you taper down too quickly and your PMR Flares up again.
Sounds like your Rheumatologist preferred you taking it 1 mg at a time as well , it's your choice though , we just give the advice to inform and help.
Yep I have a pill cutter but it’s impossible to take a 5 mg tablet & cut it into 5 accurate 1mg pieces lol. You would basically end up w/ powder & crumbs. I do use the pill cutter to cut the 5mg into 2.5. What I do & have done in cutting down each time which has been 2.5mg is if I feel any type of increase in pain, which I normally notice 1st & it will happen usually when I try to sleep. The pain will return to my hips & shoulders. If that occurs I go bk. to my prior dosage. My Rheumatologist has given me free hand to do so & it actually took me 5 try’s to get from 12.5 to 10mg before it finally worked. I’ll do the same w/ going from 10 to 7.5. Personally I think the Drs. try to get you to taper down to quickly. I can understand in the beginning in order to find your happy median but once you establish a mg lv. that works w/ no or little pain then I feel the tapering process should be slower & perhaps then tapering down 2.5mg all the way down will probably work much better. Basically staying on a certain level for a longer period, say 3 months might enable a higher (2.5 mg for example) taper to work better. But just a theory & I also realize everyone is different but that is how I choose to address it....
Do they have 2.5 mg tablets at your pharmacy it one you can get to?
Like Mrs N says at least you could split them into 1.25mg and it would make the reduction more in line with what gives less tapering withdrawal side effects or rebound Flares which can happen with bigger " drops" in dose below 10mg.
Just a suggestion , we are just hoping to help you avoid one if the top common things that happen to people with PMR as they reduce by offering you the standard advice / solutions.
Most experience is that the longer you stay on a dose , especially after increasing it after a Flare the harder it is to taper down again and the smaller the dose reductions need to be to do it.
But we are all individuals , everybody's experience and symptoms are slightly different , so it might work for you.
It's out there anyway , so it's up to you , and I hope things are successful.
I’m not sure about the 2.5 but I will look into it.
I cut uncoated 5mg pills into 4, giving me a dose of 1.25mg for each drop. I went from 15, down to 13.75, 12.5, 11.25, 10 with no problems. Below 10 has been a struggle though for the last 4 months or so. Currently at 10 for awhile before I attempt to taper lower.
Hi...I am on 1mg. and I live in Michigan. I receive 1mg from the Pharmacy at Marshfield Clinic. I have an order in to OptumRx which I should receive this month.
I am from the US and have been prescribed 1mg tablets from the very beginning of my diagnosis in March of 2018. They are readily available. Hard to believe Walgreens is telling you that.
I live in Oklahoma and get 1mg prednisone from Walgreens here. Try mail order maybe.
Hi They are available in The US. Check around . CVS has them. Good luck.
I'm in San Diego, and YES, there are 1 mg tablets!
Actually I live in Michigan and have no problem getting 1 mg prednisone at CVS Pharmacy. Check them out.
I live in Michigan I get hundreds of 1mg prednisone, in fact I need more soon as I try to get down from 4 to 3.......1/2 at a time..it’s much tougher to drop a mg when your under 5 I’m finding that out..
I live in Maine USA and I get my 1 mg tablets through a mail order pharmacy. I cut them in half, I’ve gone from 40mg down to 3 1/2 in 3 years. Once I got to 7 mg , I drop only 1/2 mg using the 5 week plan I got on this site. I did show it to my doctor n he was ok with me following it. Good luck with this awful PMR Larry. 🌻maryanne
Yep Larry , you are doing so well with your taper we wouldn't want you to hit one if those
" Too Quick Taper" flares now.
The general consensus of experience in the forum for the best success is by reducing the dose by only 10% ( or 1/ 0.5mg) each four to six weeks on a flexible time table ( as in if you are ill , run down , on holiday , overworked , having mild symptoms or stressed when a taper should begin wait until these things have settled down) .
Hope you try it yourself , getting under 10mg can be one if those stumbling block plateaus .
But this could be a key, that once you find your happy median & actually begin your tapering down, as you taper down the PMR obviously grows weaker & weaker in your body or you wouldn’t successfully be able to taper down. I feel the longer you stay on a particular dosage the further & quicker you push the PMR into remission because you are keeping it @ bay longer w/ out allowing it to flare up or so you would think of course I could be wrong lol. So if you keep the dosage on a working dosage longer the 2.5 mg taper may work just as well. Also you got to be careful not to confuse a flare up w/ withdrawals from decreasing the pred. dosage not doubting that you folks aren’t correct by any means because you are all very knowledgeable from yrs. of experience but going outside the box & trying different combatants can never hurt & I will certainly let you FINE & WONDERFUL folks know how it works out & if I end up eating crow 😂
I don’t think you can “push PMR into remission”, it continues to chug away in the background even while taking pred. In fact I’ve experienced my PMR activity increase on its own (not a flare from tapering too quickly, nor simply pred withdrawal symptoms). If PMR activity WAS able to be pushed into remission the rheumy’s would all be advising us to do so. I’m afraid there is not a clear cut path or method applicable to all of us.
I do appreciate your efforts in trying to find your own, unique way forward. You know your body better than most, and with the aid of your Dr., and 1mg tablets, I hope you find your way.
But it obviously has to be getting weaker in your system as you take the prednisone or tapering would never work. For example if you started on 40mg a day in the beginning & are now down to 5 mg a day, the PMR would have to have grown weaker, not saying it won’t return down the road, but if you have decreased over time by 35 mg then the PMR has weakened & something caused it, my vote would be the medication.
You have been doing the 7.5mg to 10mg dance for at least a year. Like others say....try a smaller drop or "cut back". It might be you only need 8mg to control things but you will never know if you keep yo-yoing between 7.5 and 10mg. At least try the option of cutting 2.5mg in half so you are dropping by approximately 1.25mg. without trying lower drops you may end up taking more pred in the long run. Was it Einstein who said the definition of insanity is trying the same thing repeatly and expecting a different outcome? I tried a 1mg drop twice then tried 0.5mg and found that was enough to keep control of inflammation...then 0.5mg 2 to 4 weeks later. So dropped by 1mg in 4 to 6 weeks using a taper plan. So when I was on 9mg I went 8.5mg then to 8mg if I had no symptoms. That way I only had to go to 8.5mg if 8mg did not control symptoms. You give yourself no choice but to return to 10mg every time a reduction fails. It just seems a no brainer. Use the recommended taper that has proved most successful....no more than 10% drop.
P.s. Try other pharmacies and if you can't get pills get the oral syrup. You can use a dropper for for a 1mg equivalent dose.
No I have never tried 10 to 7.5 yet. This will be my 1st time. I have had PMR just over 2 yrs. & started on 20mg I’m @ 10 now but a good part of that 1st year was finding my happy median w/ turned out to be 12.5 mg. I’m actually in great shape though for 60 yrs. old. While awaiting the next bridge project to begin I spent over a month operating a bush axe chopping thru tall weeds (mainly kudzu) in order to get underneath existing bridges & also culverts in order to photograph the under side of the superstructures for load assessment. I had a 24 yr. old following me w/ I pad in hand. He took the pics. while I cleared his path lol. The flares don’t really bother me that bad & if I feel that one is coming on after a week or more on the new dosage, I up my dosage to the prior & within hrs. I’m better. The going from 12.5 to 10 took 5 tries. I will look into the smaller mg pills but will still see if I can get the 2.5 taper to work as far down as I can anyway....
I tried to get below 10mg two times with 2.5 mg drop and 1 mg drop. had flares both times. My rheumi said I am very sensitive to prednisone change so I started 0.5 mg drop per month. I am on 5 mg now and going down. So in my experience 2.5 mg below 10 mg is a Huge drop. And in the end it is better to go down with pred slowly but steadily, then have a see-saw effect with flares.
Just a thought. Does he mean Methotrexate? It is used in higher doses as chemo and in lower doses, not considered chemotherapy, for rheumatoid arthritis and sometimes PMR/GCA.
Hi Larry,
Four years ago l was diagnosed with Breast Cancer & had Chemo, l was already on Methotrexate as a Steroid Sparer (which is actually low dose Chemo)
Both my Rheumatologist & Oncologist were optimistic that the Chemo l was to be treated with would in fact wipe out the PMR
I continued to reduce Pred from 7.5mg to 5mg whilst on Chemo but was also on Dexamethasone for 5days at each cycle, I certainly didn’t ‘feel’ the PMR Symptoms during that time but then again Chemo has its own set of side effects & issues, bone pain being the worst.
I remained ‘Symptom Free’ on 5mg Pred for 9months when the old familiar issues & pains started again. I was recommenced on the Methotrexate again 9months following the end of the Chemo.
So in my case Chemo certainly had an effect on it most definitely but not enough to wipe it out. I think my Consultants were hoping for a Silver Lining for me but l’m afraid to say it was not the case & four years later, l’m back on Methotrexate, battling the PMR & now on 11mg........
Regards
MrsN
Is this the bloke who you went on Twitter to contact mrsN?
And got no reply.
Thanks for sharing MrsNails, VERY informative....
Methotrexate is a chemotherapy drug - used at much higher doses than in rheumatology though. And Actemra isn't chemo, it is a biologic which isn't necessarily the same thing.
PMR/GCA are caused by a vasculitis, and for some vasculitides they DO use a chemotherapy, cyclophosphamide and rituximab spring to mind.
Actemra is not approved for PMR, just for GCA , so it will be off-label and there are only small scale pilot studies using it in PMR. They can't yet say that 10 monthly infusions will "cure" PMR, it might induce remission but there aren't any guarantees it has a longterm effect that I know of.
And given the potential risks of biologics and their effect on the immune system - really not sure I'd call it "chemotherapy lite" ...
Thanks Pro , I was just about to point out the mistakes .
I don't have time to look at the link today , but does the article actually state Actemra is a Chemo drug , or is the Presenter on one of the combo therapies that uses both Actemra and Methotrexate , which is used in Chemo Care?
No - particularly badly researched and written if you ask me!!!! Someone, not sure who, descbed Actemra as a "light chemotherapy". There's a oxymoron if you like!!!
Definitely a biologic , as my research into the " Holy Grail" for someone like me has shown.
I say , " Holy Grail" , because the way the system works in the UK , especially in Wales it feels like I am on a horrendous Medieval Quest to be able to get on it . And with the way the referral system works here in Cymru at the moment I might need to be blessed with immortality before I finally get signed off for it!!!😋😂😂😂😂😞😞😞😣
Actually gone to do a little brief reading on the use of Actemra , in case it might have been an " add on " treatment during Cancer Treatment.
So far , including on the Actemra website , it is only being recommended for GCA/ PMR / RA and Juvenile arthritis.
The other articles I have read so far certainly don't indicate that it would be recommended during Chemotherapy or used as part if it , as the Leukemia site and Actemra site both mention that it affects the immune system and that if it is discussed it should only be used with full approval from your Cancer Specialist.
The only time I see it mentioned is as a medication that could be prescribed post Chemotherapy if the patient has had extreme issues from Chemotherapy Treatment and ended up with a condition called , CRS.
I've only looked for ten minutes , but I have got this far.
Surely , if you are going to write a report , no matter how helpful it is in highlighting Awareness of illnesses like PMR, and their treatments ( certainly applauding the free press !!) , they could get a lowly researcher to double check all the facts before going on air!
This is one of the reasons we often note it's better to get your facts from the recommended Medical , Disease Specific , and Hospital websites rather than news articles , even though we appreciate the Disease is being talked about in the media.
I suppose it sounds picky , but as we know a lot of people get very anxious about the drugs we need to use and their possible side effects . A lot of patients , or their carers and families, would be instantly scared , or put off considering , Actemra by it being linked to Chemotherapy because they link it to Cancer and don't understand that treatment either.
You can say what you want about the way the article is written, but it was written WELL enough that after sharing w/ my boss he FINALLY had an idea of what I have went thru, so it WAS written good enough....
It is inaccurate medically. Maybe you got something out of that - but it doesn't alter the fact it is poorly researched and inaccurate.
You have to realize that PMR is poorly researched PERIOD, So getting accurate information about it isn’t easy to come by. It’s more rare here in the US than the UK. But you are correct on the accuracy of the medical terms, they should do more on that....
If you google PMR or polymyalgia rheumatics you can find lots of research on it. It may not be American but it's the same condition. I am not saying it's good research but there is enough to get a general understanding of PMR. Sadly you have a condition that is usually associated with elderly women and is self limiting. Research needs money, but at the moment PMR/GCA seems to get the table scraps for those reasons.
I agree 100% poop.
Any illness at any age which affects women more than men does seem to have less research than that affecting men. I can remember about 30 years ago I had awful back pain, I was sent away from the doctors and told to use paracetamol. A few months later my husband had pain in the same place, went to see the same doctor and came out with a prescription for really strong pain relief.
Omg. It occurs in lots of areas ....no or little research on joints replacement etc etc. And slightly off the point but not.....in the works canteen the men got massive portions compared to the women but paid the same price. Obviously they need more calories but the difference wasn't based on that.😂😂😂
You mightn't realise it , but in talking to PMR Pro , you are sending a message to one of the most knowledgeable and well read researchers into the condition of PMR and GCA on the forum.
A person who was there in the founding days of PMR/ GCA UK.
I doubt that there is an article on PMR and Autoimmune or Autoinflammatory advice that she hasn't read and probably should be a Professor of PMR by now.
There isn't as much research or advice written on this Disease Syndrome as for many other diseases but there is a lot more written on it and available via sites on the internet than there is for many other rare or uncommon disorders. Just looking at the description from the NHS site or the Mayo Clinic gives a comprehensive starting points and includes recommended links to keep on reading.
As Poops mentions , all the English language research is available for you to read , no matter which country you live in , or, which country it was written in . The details are the same even if the treatments available can differ.
The advice available in the US , and research being done there , plus trials and use of certain treatments, is actually growing all the time , and despite the fact that there is more Awareness of PMR/ GCA in the UK , and some other European Countries , the use of Actemra is actually more readily considered , prescribed and known about by US Specialists than it is in Europe.
Sometimes the biggest issue for Patients is that it is the Medical Professionals themselves that are not interested in learning more about the Condition or doing appropriate reading from current research to help them understand how to improve our care.
I sometimes think it's a shame they don't come and visit here , and I think it would have really helped Dan's article to be more accurate if he had taken up Mrs Ns invitation to visit the forum .
It would have added a greater dimension to the piece if he had come here and learnt more about the Disease experience of other sufferers as well.
And YOU have to realise that PMR is constantly being researched - possibly not in the USA but hey-ho. But it isn't necessary that the research is specifically for PMR/GCA - the research done in many fields and in particular autoimmunity is applicable.
All we have said is that this particular article is inaccurate and poorly written. Period.
Yes , that's why I said I applaud the fact that the Presenter is helping to build Awareness of the Disease , we all appreciate that , but that I wish they would check their Medical facts too , just so they don't cause confusion or concerns for the actual sufferers or their carers about the treatments involved.
Very glad it helped you get the help you need and deserve at work .
Without a doubt well known people can make people suddenly listen and take interest when before they could’t be bothered, sad but true, and good for the rest of us. If they are going to write in a medical fashion they do have a responsibility to be accurate and using the word chemo gives the wrong impression. However, it has to be be remembered that they are or were also sick people like us with the same effects on judgement, Pred brain, fatigue, ability to process info etc and not from a medical background so didn’t understand fully in the first place. Perhaps they shouldn’t get a megaphone but the good can certainly outweigh that, tricky one to call sometimes.
Thanks for the article Larry interesting to see that we are not alone. My side effects on 30mg were terrible, now on 3mg and feeling no side effects.
3mg WOW! I can’t wait until my dosage is that low. I’ll get there.... Continued success for you & prayers that you will Soon be down to 0mg.
Larry, I get my prescriptions from Walgreens and they definitely have a 1 mg prednisone tablet. I have found that the staff there is not always knowledgable, but it's worth the trip there to discuss it with the pharmacist. You'll find it much easier to decrease your dose by going one down once a month then start cutting it in half once you get past 7mg. Keep fighting, my friend. It's a hard road and sometimes a difficult and slow journey to become pain free.
I wonder if it is Methotrexate or similar, these are chemo drugs but given to us at lower doses?
I think we have to be careful about using the term "Chemo Drugs " when we discuss drugs like Methotrexate.
As, although drugs like Methotrexate at high doses are used in Cancer Treatment as part of Chemotherapy , they are classed DMARD s in the treatment of Illnesses like PMR/ GCA and the treatment is not a type of Chemotherapy at the doses that are prescribed for PMR and other Autoimmune or Autoinflammatory Diseases.
I have used methotextrate, effectively, shortly after (7 mos.) first being diagnosed with GCA and PMR. It was the dose for these rheumatic type illnesses, not chemo. The first day, after being injected, felt extremely fatigued. Then stronger, the next day and next day. About the fourth day, I felt better. Much of the inflammation wasn't present. relief. I used it for about three months and was able to reduce the medrol.
I changed doctors (rheum not very clean office - was worried). I stopped the methotextrate. Have another rheumatism specialist, very good. He has spoken of some methotextrate usage. I still have flares, very painful,scary with loss of vision. May do this.
Dealing with tremendous back spasms, -- have had two hip replacements. Do not want to go on medrol again. Had Cushinoid symptoms due to medication. difficult. I'm taking Tumeric, which is helpful.
Agree, on careful with definitions. At lower doses, methotextrate is not a chemo drug. It definitely is a steroid sparer and can help in treatment of GCA and PMR, esp in the early days. Thanks. best, Lynn --- Whittlesey, NYC
Great ! Have you included your experience of Methotrexate on one of Mrs Nails regular Meth. posts ?
If not , it would be great if you could add your reply there as it will be really useful for those trying to make a decision on using the drug or not.
If you press on Mrs Nails avatar or name on one of her replies above in this post you will go to her profile page and be able to add your response on her Meth. post .
It's very good for us all to get chance to read other people's stories and their knowledge about drugs we are offered .
Lovely to hear from you xx
Sorry, that’s all I meant. Thanks for the clarity as ever.
Re: Chemo drugs. My PMR numbers were not getting lower. Rheumy prescribed Methotrexate (a chemo pill/drug) I was desperately in pain and inflammation that wouldn't budge the numbers down. I took Mtehotrexate 2 weeks. My body felt sicker with than without. I read the side effects list. Then I asked myself the question.....what on earth am I taking a powerful chemo drug for???? I stopped. Next Rheumy apt. he was not happy. BUT I WAS HAPPY. Read the side-effects of any drug being prescribed. Weigh the pros/cons.
It is our body/your body. Each body is different. I am thankful I listened to my body. PMRJ
I'm sorry you didn't get on well with Methotrexate , it works for some but not for others.
Don't forget though that MTX is not a " Chemo Drug " it is a Disease Modifying Drug that is sometimes used for Cancer Treatment at much higher doses than we are given as part of Chemotherapy .
Hope things are improving now , take care.
I'm sure the medical profession are probably trialing other 'cures' for PMR that aren't common and which haven't been heard of or agreed with by others. I must admit chemo sounds a bit drastic to me but then again before I started taking them steroids did. Obviously, without other methods being trialed this disease will never be Conquered so good luck and thank you to anyone willing to become guinea pigs.
You don't have to worry , although it does have side effects or doesnt work for some Actemra is a Biological Therapy not a Chemotherapy , and as yet it is only being used for things like PMR/ GCA and RA .
Methotrexate is also not a Chemo Drug but a Disease Modifying Drug that can be used at high doses in Chemotherapy , but on the doses for our conditions is not a type if Chemotherapy.
Take care x
Fairly new to this dx GCA 6 months ago, currently on 27.5 pred & 15mg MTX/subq/weekly.
Not sure why the definition of "chemo" is so important, but this link will show that the dosage of MTX varies so greatly for different conditions, that my dose at least could not be considered LOW. drugs.com/dosage/methotrexa...
So far I have not had any terrible side effects of MTX, and if it can lessen or shorten the pred I am all for it.
Lately the studies on Actmera are so very interesting, more than 25% of GCA off pred in 6 months, and more than 50% off pred in 1 yr. Most of the study participants still off pred after 2 yrs. Hard to qualify for the Actmera here in my part of Canada as it costs nearly $5K/month. The MTX is not covered by our medical system either, but only about $20/month.
Believe me you should try being in the UK , the amount if hoops you have to jump through to get on any biological therapy is enough to bring on a Flare!
The " Chemo" term is important mainly because it is inaccurate to call MTX therapy in our treatment Chemotherapy , but also that by discussing it in these incorrect terms it does ring alarm bells in the minds of new patients who are being offered the options if treatment with MTX and Actemra but suffer Anxiety about medications and puts them off using them because they don't want , " Chemo".
As someone who has had Chemo & taken Methotrexate as a DMARD ~ MXT is a walk in the park compared to Chemo!......
Yes , if any body knows the difference it's you , I'm always amazed at how you cope x
It must be down to my Mother, “There’s always someone worse off than yourself!”
so one of the "hoops" here is trying MTX first, if that doesnt work (as in not effective or not tolerated) then we can qualify for Actmera, covered by our medical. So like it or not that is how Canada (or B.C. at least) is handling it at this point. Has to be applied for by rheumy, and mine is quite amenable.
IMHO every drug has side effects, including prednisone. Every person has different reactions to each, and so far, I am certainly not tolerating the pred well, nor able to taper without enormous difficulties. The prospect of possible side effects of other drugs is not pleasant, BUT continuing on pred for years is a nightmare. Maybe I will end up as many have and be on pred for several yrs or more, but I am going to make every effort to avoid that. It the last resort or the final product is pred then so be it, but I will know that I have explored and exhausted other options as they became available.
Have a look at the Pinned Posts & you’ll find one ‘Some Links to Research in PMR & GCA’ it’s the 3rd one down.
No thank you !
I get my 1mg Pred from CVS online
I'm on methotrexate which is used by cancer patients. Completely off of prednisone thanks to above said medication.
Hi Larry 10 years ago I started PMR within a month I moved on to also having GCA. I was seeing a consultant in Harley street he suggested 6 cycles of chemo lasting 6 months.
I had the treatment which got worse as the months went by but to made the GCA dormant it has been ever since.
It made no difference to the PMR which lasted 3 years.
I have since had a flare in May started on 60 mg steroids to protect my sight just in case however after a ultra scan no GCA just PMR I’m now on 3 mg and hoping to be finished by December.
Kind regards Bramley.
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