Update: April 2024 was scheduled for eye surgery for Strabismus which was canceled days before when in the same week I was determined by my Endocrinologist to have steroid induced diabetes which makes the general anesthesia too risky at this point. Rescheduled for August tentatively while we work on this new issue. The even bigger issue regarding my PMR the same week is that my Rheumatologist on this relapse and inflammatory markers and symptoms going in the wrong direction quickly wants me to go on Acterma. I have not wanted to go on Methotrexate for years throughout this. Dr. and I met for 30 minutes this week. He assured me everything that prednisone will eventually definitely end up doing to the body are the same side effects that may happen with the Acterma. I had a very dangerous reaction when my prednisone was increased from 15 to 20 mg in February. I feel like I'm in between a rock and a hard place no good choices and I'm actually pretty terrified. In addition, the Metformin the Endo put me on for the diabetes has me feeling all kinds of awful. Too many new things at one time. Anyone have experience with any of this? Thank you. Janet
Prednisone vs Acterma with steroid induced diabet... - PMRGCAuk
Prednisone vs Acterma with steroid induced diabetes. Really terrified
I had 2 years of Actemra / Tocilizumab and felt really well on it. It enabled me to get to zero pred! TCZ is rationed in the UK, so I had to stop it and am now back on a small dose of pred. I would go back on TCZ tomorrow if I could.
That is just my experience, but I realise that for others it hasn't been so easy.
Best wishes for whatever you decide.
Thank you for your swift reply, Rugger. I really appreciate your comment. I'm glad it's done well for you. I'm sorry to hear it's rationed there I'm in the US. Did you use the IV infusion or the injection? The specialty pharmacist told me the IV works best but I don't know.
I had the weekly injections - self-adminstered. I don't think the infusions were available to us at the time.
Thank you.
I self-inject Actemra since almost 3 years now (in Germany where it is not rationed) - I received it directly after diagnosis (together with pred) and it allowed me to taper to zero pred within 5 months- no side effects and symptoms are fully under control. I now increase the time between injections (3 weeks at present). So for me it works fine but as you know every patient is different.
What prednisone does did you taper from to zero in 5 months? I've done that once actually to half and relapsed in 9 weeks. So is the idea that once you get off the prednisone you stay on this long-term spaced out? I'm glad you had a good experience thanks for your input.
I started with 40 mg pred and weekly Actemra injections (GCA, large vessel type) and was able to taper to 0 mg in a bit less than 5 months - I then continued Actemra and reduce it very slowly (last year 2 weeks, now 3 weeks - gradually increasing the time between injections by a day every few months) - the plan is to stop Actemra within a year from now - but since I have no side effects at all there is no need to hurry (and it is not a problem in Germany to get it prescribed for long - different from UK).
I think that Actemra is a better bet than Methotrexate and certainly more curative for our conditions. I felt well on it and I am glad I took it for a year. I reduced Pred from 40 mgs to 10 mgs in a relatively short time. My drawback was Abdominal pain, eventually diagnosed as Diverticular disease. I think this started with Pred alone and worsened with Actemra. I was not on a stomach protector and only had yoghurt to protect my gut. Apart from this, it was fine.
I am sorry that you have had a storm of things go wrong all at once. There are plenty of choices of medication for type 2 diabetes, quite a few people have problems with Metaformin. I managed to normalise my blood sugars with diet and exercise alone with borderline type 2 steroid induced diabetes. Once you are feeling calm you will see that your choices are quite clear and in a sense you have already made them but you don’t like this sudden change of direction - nobody does. The operation was quite enough on its own. In the future I think that it will be biological drugs such as Actemera that will take the place of Prednisalone. It seems to be the direction the research is going in. Good luck going forward, it will work out, you will see.
I already deal with stomach issues from gastroparesis the last few years. I'm definitely having some major abdominal bloating swelling whatever you want to call it I look pregnant. Some days worse than others. I've been doing a lot of research on all of this and trying to compare the prednisone to the Acterma. Honestly I feel like they're all terrible for our bodies is there really one way to pick the better one over the other? Thank you for your comments. I know eventually this will have to work itself out but I am definitely feeling pretty awful with my physical PMR symptoms in addition to all the new issues. Take care.
The trouble is the inflammation from our conditions is not only painful and disabling but also terrible for our bodies. Possibly comparing Pred and Actemra is rather like comparing apples and oranges. I hope you can resolve this to your own satisfaction.
I hope so too.
Sorry - really don't understand this "Dr. and I met for 30 minutes this week. He assured me everything that prednisone will eventually definitely end up doing to the body are the same side effects that may happen with the Acterma"
I have been on Actemra and pred for 2 years - Actemra hasn't done anything resembling pred effects that I can tell except my cholesterol went up. Didn't affect BP which it can do.
I would go so far to say the pharmacist is talking rubbish. It may work better for RA which is what it was used for previously but some people seem to struggle with the infusions and someone said today they feel as if the infusion stops working after a week. The GCA trials were done with injections but for some reason US insurance companies won't reimburse injections. The injections mean you have repeated lower doses as opposed to one high dose and I suspect that would also reduce risks of high dose related adverse effects.
I was saying I had a consultation on Monday with the rheumatologist to discuss the prednisone and the Acterma pros and cons. I guess my question to you would be why have you been on it so long if it's from what I've been told and read it's a short-term to get you reduced on the prednisone? He said it should get my 20 mg of Prednisone which is not currently sufficient to keep PMR under control down significantly and 3 to 5 months. This is all something new to understand. Thanks for your help. Janet
No it isn't just a short term option - you need it as long as you need it. In the short term it will get you to a very low dose or even off pred altogether but it doesn't cure PMR or GCA, it is a very effective though very expensive steroid sparer. In the UK as yet it is only allowed for 1 year and only for complicated GCA - and over 50% of patients relapse when the Actemra is stopped. Restarting the Actemra then brings things under control again, Grammy80 has been on it for 4 years I think - she has told her story a few times and it has been discussed a lot.
I struggle to get below 7mg pred - if I go to 6 mg after about 2 to 3 weeks I develop sore biceps and forearm tendinitis. I'm unlikely ever to get below 5mg because of adrenal insufficiency so I'm not bothered.
Thanks for your response. I'm always amazed and literally shopped when I see some of the limitations you have there in the UK such as limitations here and especially in the department of thyroid treatment. What you have to contend with is so much worse than what we have in the US. I'm glad it's been clarified that the Acterma is not just a Band-Aid as I assumed. Thank you so much.
OTOH, NO-ONE is denied treatment because they can't afford it, whether in or out of work.
Sorry, I was referring to a lot of posts I see with people new dealing with thyroid issues which I also have due to two thyroidectomies. Having to wait close to a year to see a doctor the ranges which are considered acceptable there which would have me on the floor and the biggest problem seems to be the hassle of certain tests that are common and necessary not being available through the NHS and having to go pay for private testing I don't understand. It should not be that difficult. My heart hurts for them.
We have had US contributors who couldn't get to see a rheumatologist for a year too. The whole thyroid thing is a different matter - they dispute the testing as a matter of policy and there is a population of thyroid patients which has become particlarly vocal on this. It isn't entirely representative of the NHS as a whole. In some places there are shortages of GPs - in the UK there is a different form of office-based practice so the options for PCPs are more limited than they are in the USA. As a result there are simply too few GP appointments to go round. But the shortage of doctors is a world-wide problem, it affects you too and will get worse.
The key to reducing prednisone without a flair is to go slow. Even when on Actemera. I reduced too fast the first few times only to have another flair. I now do 1/2 mg a month.
That has been my method all along.
I've been on Pred and Actemra since late 2019. My GCA was stubborn and raging, my rheumy's words, because I had been misdiagnosed for almost a year. It was only discovered when I had visual issues and went to the ER. I can't imagine how much more difficult these past years would have been without the Actemra. Finally, I am down to 1mg, along with my weekly injection. If I get to zero, I will continue on the Actemra ...probably for the duration since I am 83. I have a friend who takes an injection, no pred, every two weeks now, and it is working for her. To me, Actemra is my friend in the long term. I'm not sure of the source where you learned it was a 'short-term fix.'....it isn't really a fix but works in conjunction with the pred to aid in the tapering. Everyone is different and the tapering a very individual thing which our body dictates. Good luck💞
PS....I wasn't a prime candidate for Actemra, but I have had no side effects.
Greetings from the USA. US insurance companies DO reimburse for Actemra pens. From the outset in 2019, my insurance company, a different one than my husband's retirement benefit now, has always spared me a large cost. Earlier, I used to pay $40 for each month, and now I only pay $11.35. I paid $11 for three months, and now nothing. Each month, I receive a cooler of four pens.
Once again, to encourage others, I've had no side effects from Actemra, and I was not a prime candidate healthwise. Have a good one!💞
Thanks for your response Grammy 80. The monthly cost is $610 on my insurance here in the US. My copay would be $250 but my rheumatologist says there is help from the company to bring it down to about $10 a month this is for in private insurance not Medicare. I guess I have some more thinking to do but everyone's positive responses have helped a lot. Thanks and take care.
That would be great to get it down to $10.00!! Since your doctor mentioned the help from the manufacturer, it sounds like he would do all that was necessary to make sure your got it. I hope you do!!! My health insurance plan is Blue Cross/Blue Shield, it doesn't go through Medicare. My husband worked in a steel mill in Indiana for 36 years and they have always negotiated good benefits for retirees. But...$10.00 beats me. You have a great attitude and approach..my hat is off to you. 💞
It has taken several weeks to go through this process. I am not retirement age so Social Security is not reimbursing or covering the Actemra. Because the drug is not FDA approved in the US and it is not covered by the manufacturer for that reason I am having to go through the Genentech Patient Foundation. They have been easy to work with but it has been a lengthy process to get there. I am also slated for eye surgery which was pushed back and have learned from the manufacturer that you should be off the drug 2 to 4 weeks prior. Right now that is slated for August 3rd. In the meantime I have been having so many physical symptoms associated with the Endocrinology aspect. I'm hoping that tomorrow my doctor will finally give me some answer as to what we're going to do since now she says it's more insulin resistance all I know is I feel awful. Just ready to move on after 6 and 1/2 years.
It sounds like you certainly have quite a bit on your plate, Janet, and I feel great compassion for you. Only one thing at a time.... after many years on steroids, my blood sugar went up, but has come back to the 'healthy' level of 90, even though I am still on Actemra.
PS Actemra was FDA-approved for PMR in the States in 2010, and my nemesis is GCA. I'm also in the States.
I forgot to mention that though they provide the medication for free I have to pay the administrative fee which ranges from $150 to $170 monthly for the IV infusion. I hope to change to the self-injectable maybe at 6 months which is way more expensive double.
I started on Metformin a month ago and it makes me sick to my stomach.
I'm sorry but it sounds pretty common from what I read and friends I know who have been on it. I was really ill for the first three days with the stomach stuff but I seem to be experiencing all the other side effects listed. I am at this point decided to stop it today so when I see my endocrinologist on Thursday I can assess how I'm feeling physically. The best to you.
I know very little about Actemra but I do have steroid induced diabetes.
My diabetes has been in remission for a good while. I was put on gliclazide which worked for me and drastically cut my carb intake. I have managed to stay in remission for 6 years and I am now on 4mg of pred tapering to 3.75mg
I'm glad you've had a positive experience koala Jane. I do see in looking up theFm Gliclazide it is contraindicated for steroids. I had a friend tell me that also. But you seem to be doing okay. That's great news. Thank you.
I tested my blood regularly and was on the lowest amount of gluiclazide for 6 months only
I reversed my steroid induced diabetes, as have many on this site, by using a keto diet for about 3 months. Plenty of info on this site, the subject comes up so regularly, as steroids duced diabetes is common! At least you have one area you can ‘fight’ & try to improve!
Thank you for your response pixix. In the beginning of my diagnosis I use the keto diet for 3 years and lost and maintained a 30 lb weight loss which my doctor found amazing. I also brought my A1C down from 5.6 to 5.1 . Unfortunately, I contracted gastroparesis while traveling and that has drastically changed my diet. It just seems that I am juggling too many balls in the air at this moment. Thanks and take care.
well done, that’s a long time to continue the keto diet, most impressive! Sad that you contracted gastroparesis & it changed everything. I’m battling, too…I have Polymyalgia Rheumatica, Fibromyalgia, Raynauds Syndrome, Osteoarthritis, Hypermobility, Essential Tremor, Vertigo, Trochanteric Bursitis, Haemangioma - spinal, Sciatica, Orthostatic Hypertension, Blepharitis & macular Degeneration…apart from fibromyalgia they’ve all arrived in the past 4 years! I think most of my balls in the air have landed on the ground right now while I struggle with side effects (I found other drugs are worse than pred) & I’m very overweight right now!
Hello Pixix,
I am sorry to hear we do share many of the same challenges. Yes, I would say I have had more new diagnosis since 2021, way too many for one person. And yes, I do believe the drugs sometimes are almost worse than the issues though in the PMR Department there are not a lot of choices. I really haven't gained too much weight, but can and normally swing as much as 10 lbs in a week from one end to another, but the prednisone fat redistribution on my body since January is beyond comprehension I have a very distended abdomen and the muscle tone visually of my upper arms and thighs are terribly eroded. None of those issues were present when I was on 15 mg but I've been on 20 mg since February 7th with the rheumatologist option of going to 40 mg for some part of a week and then 30 MJ and then back to 20 MJ so on Etc. I try to do some strengthening but then that only causes more pain with only 3 lb dumbbells I think about what I used to do at the gym. The metformin and looking at the Acterma all in the same have literally knocked me over with a feather. Thank you for your reply take care of yourself and remember it's one moment or one day at a time.
You’re right. I’ve just sent an email to my Dr putting forward my case to stop one drug, which will mean no more control over the tremors Ihave In hand and arm. But I just can’t stick fighting to keep awake every afternoon…not a normal tiredness, just compketebrain wiped out together with can’t keep eyes open! And many other side effects. It’s a balancing act,really, I think! Keep fighting the gremlins!
((Hugs))
A swing in weight of that much in a week isn't due to fat, it is fluid retention. I have just been away for a few days, one rather salty pizza, I hadn't realised how many anchovies would be on it, and my feet were like footballs! In a few days that will all have gone and I will have lost a kilo or two.
I've been on Actemra for 4 years now and I have been off prednisolone for over a year, with no ill-effects. It was a game-changer for me and I have now spread my jabs to 4 weekly, over that time. I feel a little fragile in the 4th week before my Actemra jab, but nothing major so I'm pressing on. For this reason, I'm not convinced that I'm in remission so in no hurry to stop Actemra, especially while I'm feeling well. One initial side-effect was neutropenia, which was dealt with by increasing the time between jabs. Don't be scared, it seems that most of us have had positive results, and you can just stop if you feel unwell. All the best for your journey.
Thank you lemon zest 11 for your response. I've definitely started off feeling very negative about the Acterma but everyone's responses have certainly helped a lot. Still have a decision to make several decisions to make. Thank you so much stay well.
Hi, I have been on Actemera for almost 2 years. I too live in the US. I am also taking prednisone. I was able at one point get to 1mg of prednisone last year. I also have GCA. I had a flair of GCA and had to up my prednisone. I am now back to 5 mg daily. The Actemera can raise your cholesterol so diet is important. Prednisone as you know can raise blood sugar. I take 500mg of metformin at night with a meal. I have started walking or riding my bike and have been able to keep my AC 1 at 6.2. I would try the Actemera, no side affects. I get an infusion once a month so Medicare pays for it. It is a very expensive drug. Hang in there!
3 years until Medicare for me. Looks like the self injection will more than likely be my option. I'm glad things are going well for you. Thanks for taking the time to share.
If you continue to struggle with metformin there are alternatives out there. Metformin is often the first choice but there are others.
I had a terrible time with metformin. Januvia, though, is working great.
I’ve been on Actemra for 2 1/2 years. I was able to get off 40 mg prednisone in 7 months. I have had no side effects from Actemra and feel like my old self. I have been off prednisone now for almost 2 years. For me Actemra has been a god send.
I took Metformin while I had steroid induced diabetes. Once my body adjusted which took a couple of weeks, it was fine. Once I got down to 10 mg prednisone I no longer needed it.
Thank you for replying nallufl24. That sounds amazing. I have been on this Journey since October 2017.
I’m in the US. Was on steroids 7 years when Actemra was added which enabled me to get off Pred. It did take a full year to taper completely off because of adrenals. So do go slow as you don’t want to precipitate adrenal crisis. The fatigue is butt kicking! I’ve now been on Actemra 4 years with no side effects other than my overall Cholesterol is elevated, but my HDL is so high my doc isn’t worried. I’ve used self injections and find them easy. This past year I tapered to monthly injections and took what I hope is my last dose in April. 🤞Private insurance reimburses the self injections along with a scheme from the company which reduces the pocket cost to $5 a month. Medicare will only reimburse the Intravenous. Since I just went on Medicare I’m really hoping I’m done as I wasn’t looking forward to the IV. Once I got down to 2-3 mg of Pred with the Actemra I felt great and have felt good ever since, even off the Pred. I tried coming off the Actemra once about 2 years ago (I had PMR and GCA) but got PMR symptoms again. So back on it.
I have been careful to avoid germs, but that’s good practice anyway! Actemra sounds scary, but so is Pred!
Thanks for sharing your experience with the Acterma PMR2011. I have to say that all of the responses I've received from everyone on this subject are more encouraging than what I've read in the literature.
Good morning everyone I'm very excited about all of the responses I will go through them as I can today headed out soon to an emergency dental visit to fix a broken tooth having that late night diabetes stack I swear if it isn't one thing it's another. Have a great day. Janet
Looks like I'm going to be the proud new owner of a new $1,600 crown for my broken tooth and filling. Someone turned the dripping bucket off please, LOL
When did the strabismus develop? Have you ever been assessed by a neurologist?
In January when my PMR relapsed and went back on 15 mg prednisone. Yes, I have all the Specialists on board. I think there is a direct correlation since double vision is listed as a possible side effect but my rheumatologist doesn't believe so I don't believe in this much coincidence bottom line I guess it doesn't matter it is what it is. Initially will detach and reattach muscle in the left eye which is the worst one as this will be the fifth surgery since 2018 tear and Detachment of the retina.
What is "double vision... listed as a possible side effect" of?
Note: Strabismus is not exactly the same as diplopia (double vision), though the symptoms can overlap.
Symptom of prednisone. I have both which include incredible continual migraines daily.
The reason I ask is that there is a neurological condition called myasthenia gravis (MG) that often causes problems with the muscles that control the eye(s), including strabismus (squinting), diplopia (double vision) and ptosis (drooping eyelids). Because MG affects the muscles, it can also mimic some of the symptoms of PMR, such as problems raising the arms, fatigue, and weakness in the upper back and neck. And because both MG and PMR are autoimmune diseases, they both respond to prednisolone: MG responds less well, fluctuates, and usually requires other medications as well. PMR usually raises inflammatory markers (CRP and/or ESR), while the blood test for MG looks for antibodies for AChR and/or MuSK.
Just because you have had PMR does not rule out MG as the cause of the new eye problems. You may have tested negative for MG in the past, but it might still be involved in the latest relapse. The blood test is relatively cheap, so ruling out an alternative to surgery would seem prudent. Strabismus is not a common symptom of corticosteroid use.
Thank you for your response a topic guy. I have been screened and cleared for all MG Ted related possibilities but I certainly appreciate your thoroughness.
Hello, I hope things work out for you. I have had PMR since Sep 2018, and had cataract surgery in both eyes between Nov and Dec 2020 - the consultant thought the steroids had probably hastened the need for the surgery but I would have developed cataracts in any case. I also had a late onset squint in my right eye, but this was not thought to be linked to taking steroids - this was corrected under general anaesthetic in Feb 2021. All of the surgery was very successful, and my vision is so much better - it has literally changed my life. I have tapered down to 1.5mg of Pred, but I am being very careful as I have had Uveitis previously, and I dont want to risk a flare of that or PMR!
I wish you all the best.
Thank you so much for sharing LWNE. I'm glad things are going well for you. I think it's just going to take time to work all these pieces out.
Thank you to everyone here for all the wealth of information. Happy Mother's Day to all.
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