I got a second opinion on my PMR situation and the new doc immediately wanted to put me on Actemra and Fosamax. I didn't agree to do it yet, so I could query folks here about it and think on it. My first and current rheumatologist said it was unlikely that I had GCA but the second opinion guy thought I likely could have it. No one has given me any tests for it. I have had symptoms but only occasionally: prickly scalp, headaches that move around, jaw getting tired chewing. I don't want to go on another long-term med (along with Prednisone). I was diagnosed with PMR in late September (2021) and started on 15mg Pred, now on 12.5mg.
When I pressed him about the need, he couldn't say for sure that Actemra would help me or that I needed it. He's an older, retirement age gentleman who says he has prescribed it for many people with GCA. Bowel perforation was the only potential side effect he named. He said even if I turn down the Actemra (tocilizumab) I should definitely take Fosamax because I have osteopenia. But I also have Barrett's Esophagus and think Fosamax could make it considerably and dangerously worse. (Bone density test in October last year: "Osteopenia with a relative fracture risk approximately 2.5 times that of a young healthy adult. As compared to the prior study performed 7/1/2019, the density of the right total femur has decreased by 8.7%, representing a statistically significant change.")
I quit drinking, eating sugar and processed food to deal with PMR. Get lots of calcium from natural foods and some supplements. I walk daily. Sorry for all the info and two issues. It's thrown me for a loop. Age 72. Live in the U.S.
Written by
Greytree
To view profiles and participate in discussions please or .
If you already have Barretts that is a direct contraindication to Fosamax - and your doctors should know that.
What are your t-scores? Need to know that to assess how severe the osteopenia is. It isn't a diagnosis - it is an indication that your bone density is lower than was average at age 30. It ranges from almost normal to almost osteopporosis - it is where you are on that scale that matters, not a word.
A small study has recently reported on the use of Actemra in newly diagnosed PMR. It isn;t approved for PMR because the studies have not been done to gain it - as a result funding may be an issue. And it isn't cheap if your insurance turns it down.
I wouldn't be accepting there was a need for Fosamax with those t-scores - they are about the same as mine and the local osteoporosis guru just told me to carry on with what I was doing. Which is good calcium content and 4000 IU vit D per day. But I would want another dexascan in a year or two to see if there has been any deterioration.
Any t-score between -1.0 and -2.5 is osteopenia - better than -1.0 is normal. YOu are in the middle. From -2.5 is osteoporosis
So definitely NO Fosamax (Barretts). Whether you need anything else is likely to be a matter of discussion. If, then i.v' bisphosphinate would be preferable to something like Prolia/denusomab which is given as 6 monthly injections. However - once you are on Prolia, you either have to stay on it for life or switch to a bisphosphonate instead since when you stop Prolia there is a rebound loss of bone density which can result in spinal fractures - exactly what you are trying to avoid.
Thanks so, so much. I don't know what my second opinion doctor was thinking! He's a smart, good man, but his eagerness with meds vs talking out options worried me. I still am concerned about the GCA scenario and want an attempt to get a diagnosis - unless that's crazy. I have looked through posts as best I can and see that one possibility is a specialist ultrasound scan. I know the biopsy of temporal artery is iffy to get the right spot to confirm GCA. What would you recommend?
Do you have any real GCA symptoms? They sound a bit vague but one simple screening test developed by rheumies in Aus is to chew gum at one chew per second for 2-3 mins. If you develop claudication pain - aching in the jaw during the chewing action that then resolves when you stop the chewing action is considered very indicative of GCA, You are already on pred but the temporal and brachial artery ultrasound option might still be valid if there is a skilled and experienced operator available. It isn't universally available.
Thanks. Will try gum. My jaw feels a bit tired when chewing and I've had spots of prickly scalp off and on -will last 2-3 days then go away for several weeks. Same for moving headaches and sensitive temples.
Yes, I've had neck pain that settled in for a couple of weeks and is now gone. Well, actually, there are twinges in neck this morning. I tried Ibuprofen when it settled in, but it didn't seem to make much difference. Hard to tell.
It is thought that the autoimmune cause of the inflammation that underlies GCA can start but then abort - so you can have vague GCA symptoms, sometimes not so vague, that then disappear. It happened to me. GCA patients almost all agree that the headache "is like no other" although not everyone has the headache just to confuse the issue! Unfortunately, when it is that variable the available tests are unreliable - you can only see what is present.
My headaches are not so bad, but then I had migraines throughout my childhood and into adulthood. If the GCA aborts, is there a chance it will never fully develop? Should I wait for the symptoms before any medical test are done to diagnose it?
Yes - mine have never returned. I don't think there is a lot of point pushing for investigations without symptoms - there is a form of GCA called occult GCA that happens suddenly with no warning which is a risk. But the other risk is that doctors decide you are crying wolf when they find nothing despite very mild symptoms.
What do you think about the second opinion rheum doctor wanting to put me on Actemra right away? My primary rheum doc thinks it unlikely that I have GCA.
Will your insurance pay? That is really the primary consideration in PMR. If it isn't likely it is GCA - it may be a bit OTT if they are going to be stuffy about it.
There is a recently published small study from Austria in newly diagnosed PMR which my rheumy is very excited about. There is also a larger French study, as yet unpublished, in relapsing PMR which he is equally excited about. Whether they will change the attitude to using it in PMR remains to be seen though.
A hospital pharmacist was brought in to talk to me and show me how to use the apparatus for Actemra to give myself shots. She said there would be a process in which my insurance would be checked and hardship cases can get breaks, but I’m not a hardship case. Do you have the first study that is out of Austria? Should I, at this point, go with Actemra if insurance and I can swing it?
I don't know, Biologics aren't sweeties either. But this small study does suggest it will work for at least some PMR patients. What I don't know is how long the remission appears to last.
Thanks. Will have to read this a few times. How odd this sentence seems to me: Serious adverse events were observed in five placebo patients and one tocilizumab patient. You got to wonder why placebo patients would be seriously affected.
Aha! I have to read it a few more times. Did your doctor tell you much about the other study, the unpublished one? Aren’t some people who post here on Acterma?
This conversation really interests me. My new Gp wanted to put me on a biophosphate as he said although spine OK the hip area was going toward osteo with bone loss ( I do not have number at hand), I refused due to gastric ulcer, some esophagus problem and age 94. I reasoned that I have already lived a long life ad the body simply wears out. Have heard some bad stories as result of Fosamax. Read you every day
He is a new one and is supposed to have it all, but I have the feeling he is one of those "one size fits all," so I take my heath into my own hands much of th time. My second opinion sites are either or all Mayo Clinic, Cleveland Clinic or Harvard School of Medecine
The whole thing does sound a bit iffy. My GP is very keen I should go on Fosamax or an equivalent as he has read it somewhere. I think I would want to know more about your bone density results before saying yes to it.
Don't know if you will see bone density info in reply to PmrPro, so here it is again: Bone density of the lumbar spine, (L1-L2): 1.176 grams per square cm
T-score (SD of peak BMD): 0.0
Z-score (SD of age-matched BMD): 1.7
Bone density of the neck of the right femur: 0.824 grams per square cm
I would definitely give the Actemra a try. You may well find coming down from Prednisalone much easier. Research has shown that unlike Prednisalone, it has an impact on the actual disease, not just the inflammation. You could be one of the lucky ones. As for Fosamax, this is not at all advisable with Barrett’s oesophagus. Have a look on FAQs to read Herons post about how she improved her bone health without drugs.
Thanks. Do you know people who have taken it? I don't even understand if it is approved for use for PMR and/or GCA. A side effect can be a perforated bowel, but I don't know how often that is the case. I'm trying to find more info. (Is prednisolone the same as prednisone?)
Actemra is not approved as yet for PMR - approval usually requires relatively large scale clinical trials which were done in GCA (the Giacta trial) but not in PMR. Two clinical trials have been done since, one small one in steroid naive patients and one larger one in relapsing PMR. Both showed very similar results to that found for GCA but my rheumy says he thinks it is very unlikely further approval will be sought as the drug is now out of patent and the cost of seeking approval would not be justified.
It is approved for GCA, has been for a few years, and then it depends on each country's drug approval limitations and/or the rules set by an insurance provider.
Prednisolone is the active form of the substance, prednisone is what is called a precursor and is metabolised in the liver to form prednisolone which takes about an hour after absorption.
PS - if you look at the Related Posts to the right at the top (on a laptop, not sure about a phone) you will find links to a lot of other posts about Actemra. If your use the search function using tocilizumab you will find more - that is the substance name and what it is referred to as in most of Europe.
I take it myself. It enabled me to get down from the GCA dose of 40 mgs to 10 mgs in a few short steps without a flare. This has reduced my accumulated steroid burden quite significantly. I agree that all the drugs we are offered have side effects that make scary reading.The stomach tear I have read about is a very rare side effect.
It has NICE approval for the treatment of GCA. This stands at one year’s treatment but I think it may be extended ( in the UK). A number of us on this forum take it. Like most drugs, it works better for some people than others. It is the first drug other than steroids where research has shown real beneficial effects.
PMRPro knows the difference between Prednisone ( US) and Prednisalone (U.K.) but essentially, they perform the same function and are both steroids.
In the U.K. Actemra is referred to as Tocilizumab. In America Actemra is prescribed for both PMR and GCA. It is an expensive drug, usually given by subcutaneous injection ( my husband does mine, since I squirted it around the room once). If you have other specific questions others will join in. You are well monitored on this drug.
Made me smile to read that you had inadvertently spilled the Actemra. I did the same and was riddled with guilt to think that I had wasted the government’s money. I prefer the administer-it-yourself-one to the auto inject which is the one that made me jump and cause the spill. ☺️
Hi Greytree, I have been taking Actemra for 6mths and have had no side effects at all. I was concerned about the listed side effects and the dispensing pharmacist told me 'Drs all say the drug has dangerous side effects and the patients who take it all say it's the best thing they've taken as it helps them get off prednisone!'They will check your bloods/liver function monthly to monitor any issues. The start of my GCA was similar to your description, but alot stronger, especially head/tongue/jaw symptoms.
I can't offer any learned advice like PMRPro and the others, but that's my experience😊
Unusual that they want to start Actemra almost as 'first line therapy', the routine here in Aus is to start 60mg prednisone daily to avoid the potential ocular issues, once GCA is confirmed.
Thanks so much! GCA has not been confirmed at this point. My rheumatologist thought it unlikely I had it and when I got a second opinion, another more senior rheumatologist thought it could be likely that I did. Not helpful. (-:
Hi Greytee, I have been on Actemra for 3+ years now. My story is different in that I had PMR for 6 years when then developed large vessel GCA. I was placed on high dose Pred then Actemra. The Actemra was a game changer. It allowed me to taper and after a year come off the Pred. Actemra worked well for both the PMR and the GCA. The only issue I had with Actemra was mild headache the day after injection and an occasional itchy hive at the injection site. I was then able to taper off the Actemra last Sept. Unfortunately symptoms returned after I had Covid in January, so back on Actemra and Pred (came off Pred after 2 months once blood level of Actemra established). I am in the US and have private insurance so qualify for the company support. Out of pocket expense is $5 copay a month. Medicare may not qualify you for company support which could make it much more expensive. Be sure you know the figures up front.
Hi PMR2011,I was hit with PMR last Jun '21, I'm 65 and not enjoying taking Prednisone (~12mg/day), but was concerned with side effects of Actemra (tocilizumab). Sounds like you've been had good luck with it? Logistics question- How is it administered each week? Do you do it yourself or thru a doc visit? Thanks so much!
For GCA it is best administered subcutaneously vs intravenous. Usually it is prescribed weekly (tho some start with every other week) and self administered. You get used to it pretty quickly. Yes, the literature that comes with the prefilled syringes is daunting as there are paragraphs filled with potential side effects. Though if prednisone was first hitting the market in present day, I think it would have the same lengthy list of potential adverse reactions or side effects. I’ve had very good luck with Actemra. Some folks don’t though.
Thanks for the info! All good to know. That's a heck of a good price. Yes, I'm on Medicare and have no drug coverage, so I will probably be in bad spot in getting the drug.
By the way, I never took a bone drug the whole 8 years I was on Pred and my T scores were slightly worse than yours (osteopenia only). I take Calcium, vitamin D and K3 and do lots of walking. Once off Pred my scores improved a little and I never had a problem.
If you haven't read it already have a look at my story. Since I wrote it several years ago I had quite a serious fall, although admittedly indoors on engineered hardwood laid over concrete, not outside, and nothing broke. I am such a klutz if I was truly fragile I would by now have broken something!
Also, if your bone density has changed significantly, first question, was scan done on same machine as first one? Second, there can be other reasons for bone thinninng, not just pred, and before taking any medication, even an infusion which would be better for you than oral med, at least gutwise, you should be tested for secondary causes of osteoporosis.
Dear Greytree, I'm in the states and I can just skim over my story with GCA over the last 2+ years. I had many of the same symptoms you do..neck pain, jaw sensitivity and was never diagnosed with GCA until I lost the sight in my left eye. It has been my experience the biggest problem in the states is that most physicians don't recognize the symptoms. If I had your opportunity of even a possibility of help, I'd have been taking Actemra as soon as it was mentioned. It is a personal decision(I had experienced bowel issues and stomach bleeds) but for me, it was worth the side effects to take Actemra.
What do your blood tests show about your CRP and SedRate? Have you seen a rheumatologist? I never even had one of those 'killer headaches'. My biopsy by a vascular surgeon came back positive, but I know folks who have gotten negative results on the biopsy and had GCA. Once you are on Actemra your CRP and SedRate will always be normal and then you have to go by your symptoms. I'd hate to see you suffer a sight loss if there is a possibility that Actemra can help. I've suffered no side effects except a more likelihood to get infected or slower to heal...cat scratch for example.
I have AetnaMedicareAdvantage, not the greatest insurance, and I usually pay $9.45(that is correct) for a few months at the beginning of the year and then -0- after that. My GCA had several months to go wild and has been quite difficult to contain, but I'm getting there. I'm still taking prednisone along with weekly injections. My prednisone is at its lowest at 10 mg.
This is all personal opinion, I've no medical training. Finding this forum was a lifesaver for me because even though I was diagnosed, I knew nothing about the disease. You don't want to wait until the sign that you have it....is loss of sight. If you live in a rural area, are you able to get to a larger city hospital? I was living in rural Maine when I skidded..... I wish you the best and please let me know how you do!💕💕 Sorry it is so long but I'm a bit passionate about this!
Gosh! I was diagnosed with Diverticulitis last week. The physician said it was “wear and tear” most people have it later in life and don’t know that they have it. Not a word about the Tocilizumab which not many doctors seem to have heard of anyway. I guess this is the end of the line for me and Toc. Also the explanation for my lower abdominal pain for the last 3 months. Thanks as ever Dad2Cue.
Thanks so much for detailed information. It's really invaluable to hear your experience. It's quite a cautionary story and I appreciate it. Interesting about your symptoms and similarity to mine. The CRP and Sed rate were last done in late December. They were in the "normal" range, but I don't think it was the normal range for me. They were sampled three years ago and were not approaching the middle of the normal range found in a sample in December. That's when I had been on Prednisone for 2.5 months or so. Am going to go look for the numbers and add them in another post when I find them. I have Medicare and a supplement that is pretty worthless.
Amazing, isn't it? We pay through the nose and have to jump through hoops for our benefits. Sometimes, I just don't have the energy to deal with them....I'm working on a claim submitted in October of last year. Every representative gives me a different story. If you do decide to go with Actemra, if your insurance won't cooperate the drug company may if approached directly. They are actually obligated to help because of the outrageous charge. I have information on another medical outfit, called Medicine Rx. If you ever want that information you can just private message me and I'll give it to you.💕
See my post with the attachment that shows the link between Tocilizumab and lower intestinal perforation. Sorry I am on the cusp of learning about this too.
I am grateful for this. Diverticulitis has never been mentioned to me as a danger. I have searched and found the study that looked at 3 different biological drugs ( sp)including Tocilizumab ( in relation to Rheumatoid Arthritis) which was the worst in causing damage to the colon. This study is referenced in other discussions of side effects and seems to be the only one. Initially Tocilizumab helped me to reduce quickly from 40 mgs of Prednisalone to 10 mgs. I have damage from Prednisalone eg hypertension, raised blood sugar, the start of cataracts. I wondered if I persevered with Tocilizumab whether I could complete the taper at least to 2 or 3 mgs. My main problem has been infections - 7 mgs of Pred won’t have helped that. My abdominal pain began 3 months ago. The colonoscopy last week showed diverticulitis that the doctor deemed usual and normal for my age. I missed that post of winfong’s, I will try to find it. Thank you for the trouble you have taken. I will read the link when I am less tired and try to attach the Tocilizumab link about the research study. It is at times like these that I am grateful that we have each other.
I am wired imagining stomach bleeds. I’ve gone though. Thanks for the info. I did read the link and the symptoms fit me, enteropathic arthritis. Getting old is definitely not for sissies - Bet Davies I think. Good night.
I had seen it and commiserated with winfong without realising that it would soon have personal relevance to me. I wish I could give you all the doses of Tocilizumab in my fridge - still sealed and in date. I broached this with my Rheumatologist who said you cannot donate them because they have not been stored in an Industrial fridge. Frustrating waste. My indecisiveness has caused this. The lower abdominal pain is always there. This has helped me to decide finally to give it up. A stitch in time. I wonder how winfong is now and what drug they are trying? I see my Rheumatologist in June. I will email her about this. She will offer Methotrexate that has been stalking me for years - sigh!Thank you for sharing your extensive knowledge and experience.
I got the perforated bowel closed and the diverticulitis to cool off with hospitalization and major doses of antibiotics. It took a few weeks, accompanied by a super bland diet, but all seems good now.
My rheumy switched me to leflunomide. Just had a bit of a flare, so not sure how well that stuff's been working. That is, though, the first issue I've had since I started - back in October - so maybe this one's right for me.
Probably a good place to mention the difference between diverticulosis and diverticulitis. The 1st is pretty common in people past a certain age, and is totallybenign. The 2nd is much less common (<5% of people with diverticulosis), hurts like hell, and can lead to all sorts of nasty complications.
That is all enormously helpful winfong. I am grateful that you took the trouble to relate your ordeal. It must have been quite frightening and unpleasant. I am so glad that you have recovered and are doing quite well on Leflumonide apart from a recent flare. Detective work will tell you whether it was a gradual build up of inflammation, over doing things, a delayed reaction to your experience , or some other stress, I guess. I might ask to try it rather than Methotrexate.Thank you for the clarification on the difference between diverticulosis and diverticulitis. I had been wondering. I think the doctor who did the colonoscopy was describing diverticulosis and I think the pain I have been experiencing is a warning that diverticulitis is on the cards unless I make some changes. Already the foods I can tolerate are getting limited. I have burning pain in the lower abdomen, almost all the time. Thanks again! Keep well. 🌼
Thanks, Jane. BTW, my real name is Cliff ("winfong" is just my "Chinese" name, from when I lived in Hong Kong - great pseudonym though).
Bowel perforation actually is a hot topic in another group I'm in. It's interesting to see it here. It's definitely a risk with actemra (though I seem to get whatever the worse case is for whatever condition I've got or medication I take).
My experience with diverticulitis is that it's stop-you-in-your-tracks pain - straight to A&E or call an ambulance. I do know some folks where it's not as urgent, but that's more the exception that the rule.
Thanks Cliff, I like your Chinese name. I had one set of pains that felt like early labour pains. It is now reduced to burning. There is a penny sized pain on the right that spreads if I eat challenging food. Managed on a little white rice, boiled egg and white fish today. I also experience IBS symptoms too. I’ve decided to give up on Tocilizumab. Thank you for your shared experience.
Early labour - yup, that's it (not that I would know though)! Yup, IBS was that other forum. Make sure you get to a doc (or A&E) as soon as you can. Not something you want to mess around with.
Note that I said “ early” Cliff and no dear little bundle of joy to compensate. 😉The strong waves of pain were reminiscent. I am not sure how doctors would diagnose a perforation in the lower intestine. Nothing showed up on my Colonoscopy except age related diverticulosis. Stool tests show no blood or infection. A lower abdominal scan was clear. The pain remains and my diet needs to be very careful. I am clearly unwell. Your help has been invaluable.
As I understood the articles I read - the risk is predominantly in patients with pre-existing diverticulitis. And as with pred - I suspect the reason is that the drug masks the inflammation developing so there isn't the usual severe pain.. A very low threshold of suspicion is required in such patients - symptoms without intense pain can be experienced;
The serious side effects info on the company website makes my hair stand on end. It's this just par for the course for any meds for GCA, RA, etc? actemrahcp.com/ra.html?c=ac...
It is the same for ANY drug, including OTC painkillers like paracetamol/Tylenol and NSAIDs in general. Both list the ultimate adverse effect of death.
For the benefit of the US litigation culture, they mention every thing that was noted during the clinical trials plus a few more gathered post marketing so that they can't be accused of not disclosing a potential problem whether it is truly due to the drug or not. You have seen the headlines during the Covid vaccine saga. Some of the potential effects that are listed quite simply are actually a risk for a specific situation and then consideration must be taken by the doctor as to whether the benefits for this particular patient outweigh the risks. Doctors aren't that keen on risking their patients' lives.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Stopped Actemra, new questions
Actemra
Actemra Side Effects?
Afraid of Fosamax?
Dosage upped today and told I must take Fosamax.
