My diagnosis is Extra Cranial GCA/LVV. I stopped Tocilizumab 4 weeks ago because of repeated infections and chronic (4 months) lower abdominal pain with the symptoms of IBS and UTI. I am on 6 mgs of Pred and have developed hypertension ( medicated) and borderline Type 2 diabetes. After 2 weeks the abdominal pain subsided. However, a nasty flare began to develop. I travelled by train to London this weekend although I practiced pacing and had plenty of rest at the hotel. I was unable to make the first event because standing and queuing were unthinkable. Significant foot and leg pain was building ( I have Psoriasis in my feet and it was flaring, but this felt like deep bone pain as well). My second event was the theatre and by this time the pain was creeping up my legs. I was hardly able to get in and out of a taxi. I sat through a great theatre performance though in extreme discomfort. Had it not been so amazing and distracting I would have left. I took an extra mg of Pred reluctantly because of my endocrinologist’s plan for my adrenal recovery. This may have taken the edge off the pain and stiffness.
I do not have a diagnosis of Psoriatic Arthritis and am aware that it is a possibility. I feel as if I am between the devil and the deep blue sea. I don’t know whether to try again with Tocilizumab, I really don’t want to return to high dose Prednisalone as it has begun to show long term damage to my body. I have never experienced severe foot and leg pain during the 6 years since my first PMR diagnosis. It really did reduce my ability to stand and walk.
I would be particularly grateful for any insights from people who have my diagnosis and are experienced with Tocilizumab. There doesn’t seem to be anything other than Tocilizumab/Actemra or increased Pred. to treat this with. To add to my worries I have been diagnosed with dilation in the ascending Aortic artery which I believe to be linked to extra cranial GCA. So far my Rheumatologist has not responded to my emails. I see her mid June. Any advice/ opinions are welcome.
Apologies for the complexity.
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SheffieldJane
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I'm so sorry to hear that this flare has spoilt your planned trip to London, but glad you could enjoy the theatre in spite of the pain. If an extra mg of pred may have helped the flare, it points to your not being on enough to cope with the inflammation.
I share your diagnosis and have had 2 years on Tocilizumab, which helped me reduce the pred to zero. However, our Rheumatologist is not confident that I am in remission and has started me on Methotrexate - 2 doses in and so far, no problems. So there are other things she could try for you, and for me if I don't tolerate MTX!
Her latest article in the charity's newsletter, NEWSWIRE, states that "some of the drugs..... (that are used in other rheumatic diseases)..... can shift the balance of the immune system to make relapses less likely, and resurgences of feeling well more likely". Maybe there is light at the end of this PMRGCA tunnel!
I hope you will be able to speak to her soon and maybe see her before June. Only then will you be able to discuss whether to use up your remaining TCZ. The fact that your abdominal pains resolved after stopping TCZ may be coincidence or not?
I know you'll let us know how you get on.
I'm sure you will rest once you get back home from London. Take care Jane xx
Thanks Rugger. Do you recognise the foot pain, creeping up the leg, making walking very ungainly? This is a new symptom for me.I am wondering if my lower abdominal pain and diahorrea were a type of gastritis that needed a pause in Tocilizumab to recover. It seems to be a very strong immunosuppressant.
I don't recognise the foot pain you describe. I've had an occasional pain under my heel which I thought might be plantar fasciitis, but it resolved and I think it may be that my cosy winter slippers were too flat! I moved into my summer slippers the other day, with a thicker sole, so I'll soon find out.
TCZ is a very specific immunosuppressant, targeting IL6, so although you might feel it is "strong", its action is not as broad ranging as some. Whatever, you seem to have benefited from stopping TCZ as far as your abdo symptoms are concerned.
My foot pain began with plantar fasciitis ( self diagnosis), whenever I put my feet up ( often) I would get heel pain. A cushion helped. I have seen some very squishy rubber type slippers advertised on the Internet - slip on. They look like they might help.Since TCM I seem to have Blepharitis, nasal infections and UTIs all the time. With Pred there is a double whammy of immunosuppressant though.
Is it better when you wear shoes? The British slipper is very bad for feet and legs, no support for aging bones and muscles. I haven't worn slippers for years - house shoes only.
It was a fight I had with my MIL - but she did eventually admit that decent shoes made her a lot less wobbly!
Bare feet or socks in the house - done that all my life. Sensible shoes out, always. Time for granny booties I guess. Although it only hurts when I put my feet up. The foot pain yesterday was deep bone pain all over and under the foot.
One of the things that started with PMR was being unable to walk in bare feet at all. Over the years with pred that resolved and I did go barefoot in the house most of the time. BUT if I am having any problems with feet or legs I notice I am much more comfortable with my house shoes - which are shoes in fact which I bought for my daughter's wedding which was when I was at my worst on methyl pred!!! I love them to bits though - they are an upmarket clog shape, not at all British, very Austrian
I'm not in your league, Jane! I get my thrills at ALDI and Home Bargains - next door to each other in our 'village', a mile away from home. I always mask up and go at 8am - I used to be one of the 'vulnerables' allowed in at 7.30am!!
Wasn't the looks - it was the feel. My house shoes are a similar shape but leather and looks are the least of my concerns, learned that in Germany 40 years ago!
I could only wear Birks when PMR first started - but price of shoes should be immaterial. Same for your bed - if you aren't in one, you are in the other!
I have had plantar fasciitis in both feet recently and my podiatrist recommended OOfo's. I have the flip flops and they are really comfortable. They take the weight off the heels and are very cushioned.
Sorry that I have no experience or advice, but just to say you do seem to be having a rotten, trying time. After all the lockdown stuff, it seems more cruel that getting out has hit such a wall. Hugs
Sorry to hear about your London trip not being all you’d hoped for……
…not sure what the situation in UK is regarding a return to TCZ/Actemra once you have come off it. Or haven’t you officially come off it? You’ll obviously need to discuss with Rheumy and I’m sure if she’s in agreement she’ll do her best to get you back on it.
I have a decent supply in my fridge due to coming off it for infections periodically and my indecisiveness. It is of no use to anyone else apparently. Dr Mackie is marvellous and very respectful of her patients’ relative autonomy. She is prepared to say “It could be” and “possibly” and “we just don’t know”. She carefully stays in step with her patients but sometimes there are no definitive answers. I can hear her in my head. I suppose we are the early adopters.
Thought you said you still had some, but wasn’t sure….sorry can’t help on whether to resume or not, wasn’t on offer in my time.
So really it’s a decision you have to make for yourself, I know you’ve had issues with it previously, so it’s a difficult one…all I can do is wish you well. 🌸
Thank you for this DorsetLady. If my gastric trouble was a virus or an infection then possibly stopping Tocilizumab made sense. I have taken the plunge and will document the effects.x
Jane, I am so so sorry about all this. Your experience with PMR and GCA has been a really rough one. You are a bright light in my life and always so amazing. I wish only I had a solution..or a plan.. I am hoping others will. !! Keep on posting and keep on forging ahead. And I will send BIG healing!! and hope that that can help.
I don’t have any wise words for you but I wanted to let you know I hear you and am with you in the pit that all this can put us in. I had a PMR flare as soon as I travelled to Croatia 10 days ago. I have been back a week and still feel dreadful. I think that post Covid fatigue has joined the party, so I can’t really do anything . I am also weaning myself off Amitriptyline as it seemed to be doing me more harm than good, so that may well be adding a symptom or two. Dr. Hughes also thinks I now have fibromyalgia because I have debilitating pains in one shoulder/ arm and one foot. Like you, I am also beginning to see the effects of long term pred - t2 diabetes, osteoporosis etc. looking back over the ten years, my PMR has never actually abated at all!
Thanks Suzy. I really did have a honeymoon period when life was simple with PMR and Prednisalone. I was practically, pain free and fully functioning. No major fatigue. Prednisalone did exactly what it says on the tin - no major flares. Then I wobbled at 7 mgs, stayed for a year, then tapered to 3 mgs and boom! Extra Cranial GCA. Lord knows how long it had been nestling in my armpit.I am so sorry about Croatia, it looks so beautiful, I have always fancied going. Have you considered asking about further tests at this stage?. Extra- Cranial GCA does not always bring anything clearly definable to the symptom picture - you just feel awful - sick and tired. Mine was diagnosed via a specialist ultrasound scan, looking for the distinctive halo cells. An MRI can also provide a diagnosis. Poor Rugger lit up like a Christmas tree.
I will have a phone consult with Dr Hughes in a couple of months by which time I should be off the Amitriptyline at least , otherwise there are so many variables! I have had this pesky painful foot for well over a years now and yet to have a diagnosis. It is very sore on the top especially when I walk and I have almost constant pins and needles. It has even started giving way occasionally. One foot surgeon diagnosed capsulitis and did some injections that didn't work. When I looked it up my symptoms were the exact opposite of those for capsulitis!! I am going for another opinion soon but not that hopeful!!We went to Split in Croatia on a singing holiday which was really lovely. ( My body hated it) Split is beautiful but no good for anyone with mobility problems. The hotel very kindly found me a wheelchair eventually but there were not any in Split itself!
I am glad you got to sing, that’s healing in itself. Have you ever had your foot X Rayed? I would want that. I get pins and needles if I so much lean on my elbow for moments. I wonder if it is related to our conditions?
Yup! X rayed and MRIed! Apparently not much to see except a bit of arthritis, but he only scanned my toes, so maybe more to see further back? GP just says he has no idea and podiatrist says it’s a mixture of all sorts of soft tissue issues. The orthotics haven’t worked at all however- very puzzling. 🤔
Hi Jane, so sorry you are going through this. I went through a “phase” of leg/foot pain that was unlike my original PMR. I had started TCZ and was tapering steroids. The pain was awful if I had been sitting a while (such as a car trip) then went to stand up and wham. If I could soldier through then walking a bit actually helped it. At the time I couldn’t tell if it was reducing Pred, disease activity or TCZ! Eventually it went away, so I’m still not sure.
Have you tried TCZ every other or every third week? Would that help with the side effects? Currently I’m on every 10 days. If I’m due for an injection and have no disease symptoms I stretch it a few more days so I’m on the minimum dose to control it. I hope to shift to every 2 weeks soon as this is my second go round on it. I have not had and pain, but do seem rather “gassy” this time round! 🙂
That is helpful. TCM is not as clear as Pred is in its efficacy, not immediate, but if this is me without it, it was working away underneath. I am going to try fortnightly. Writing it down and having people’s views really helps. It can be a lonely business.
Hi Jane, I am so sorry to hear about your pain & discomfort. You have really been through the mill & make me realise how lucky I have been really. Must stop moaning! Thank goodness you have Dr Mackie on hand. I’m sorry I have no advice to give but healing thoughts!
I am sorry that you are experiencing such troubles. My diagnosis is PMR/GCA/Large Vessel Vasculitis although my Rheumy says it may also be an Inflammatory Arthritis. I was prescribed Tocilizumab for relapsing GCA and it was very effective for me with minimal side effects initially. Overtime, I had to move from weekly shots to every other week as I started getting upper respiratory infections which just increased the fatigue also got shingles. I then went to every 3 weeks for TCM and then every 4 weeks have been off it for 7 weeks. TCM allowed me to taper off Pred (4 months of zero so far!). I still have fatigue which is slowly improving and am monitoring symptoms. My Rheumy said I would just have to try and come off it and see what happens. I have had leg and foot pain from a blocked femoral artery. At its worst, the foot turned white so it is easy to diagnose. All the assorted medications/ illness/age have made my tendons very fragile and I have to be very careful that the shoes I wear have very good arch support. I also try to elevate my feet whenever possible. It is old school but I find it helps. If my symptoms return, the plan is to restart TCM, at every other week. I only weigh 120 pounds and my Rheumy has speculated that because my weight is low, I may not need a more frequent dosage. I also tried Methotrexate before TCM but it didn't help me at all and the side effects were awful in my case.
Thank you for sharing your experiences it really helps. You have really been through it. It gets so complex like robbing Peter to pay Paul. I hope you continue on this hopeful trajectory.
It is a tough call I know, Jane, and such a personal decision. Some time ago someone said to me....cost vs benefit...and that really sums it up. Life changed on a dime in 2019. It is such a trade off! I can only say...I wish you could feel better and not have the worry...but isn't that the stumbling block? I think it is more like cure vs illness....but there are so many hopeful folks on here that do come out the other side!I was a barefoot contessa...little exaggeration there, always barefoot, in or out, on hot blacktop ...nothing bothered me. NOW....I have found Crocs to be my solution..I feel barefoot but I have some support. I do have lots of leg pain but really pretty sure it is varicose veins. Sometimes support hose helps but sometimes I think they strangle my circulation. I'm seeing a vascular specialist this Wednesday....???
Thank you Grammy. It’s well gone midnight here and I feel supported by this lovely group. It is also a little way into my birthday, so I need to put on a happy face and count my blessings. Hugging you back.💖
So sorry to hear this Jane. Cant relate to Toc but very much the leg pain. Ive been awake most nights with a return of horrible leg pain and ankles. I took the dreaded plunge and put up my pred a couple of days ago as was feeling like hell in earth. I understand your reluctance to not go up on the pred. Hopefully returning to try the toc might you help, i really hope so. X
I honestly know that putting up Pred dramatically would help. I could be on this hamster wheel forever and my hope for my elder years a diminishing speck in the distance, if I don’t explore alternatives. Did you get relief? Leg and foot pain was peculiar for me and very disabling. It is usually ok when I am lying down. I want it to be investigated though. Coming to you from a prone position. 🙃 x
Oh i understand all that, thoughts for the future fill me with dread, where does this all end!! Honestly been looking like a half dead person, so i had to do something, could barely speak with fatigue, hoping the pain would improve. I think the small increase has helped to move me up the scale humanwise, i got that i just couldnt face the day. Some improvement in legs, yes more bearable, would probably need to increase a bit more for more payoff, but it fills me with dread, the bones, panic if i cant walk, i feel im worrying all the time about this. And in the background thinking stupidly that i can decrease the pred!!!! Not happening! Not an easy road and youve had higher pred than i did. I think you've done great, i often think of you. Fingers crossed for you x
We are in the same boat. I am due a DEXA scan on 24/5. I have had two really good ones. I can’t believe I will be third time lucky, I have been too poleaxed to do the weight bearing exercise. So more pressure and anxiety. Beginning to understand doctors’ reluctance to prescribe or give you sufficient Pred. Without it though, I couldn’t have functioned. I had about 4 good years, with it for PMR.
Yes i get it. I dread another discussion about "something for your bones" my rheumy was pushing hard. But i didnt need it, so no way im taking it. But as long as it lasts!!! Do let us know how your doing back on the tc, we could write a book!!
Kate Gilbert wrote a book that managed not to be moany. Beyond me I think. I had a Tocilizumab jab after a lot of consideration and have already got a niggling pain in my lower right abdomen. This is where the trouble started before sigh.
It’s easier to write about it afterwards and be constructive and not complaining -more difficult whilst you are actually still going through the mill. -
Appreciate the reference to a hamster wheel!!😅 I can't walk barefoot for any length of time, it's way too painful due to bunions and loss of the fat pad under the toes. Like PMRpro I wear indoor shoes, mine are Finn Comfort. Have a pair for outside too. Not only do they have the proper arch support, but also a soft stretchable bunion bra! I suspect I may have some arthritis, but haven't had that investigated.
I wanted to write you privately and I’m not sure how if you send me a message I can tell you my experience but it’s really not positive and it’s a little bit scary so don’t want to put the fear in everybody else!!
I think you should share your experience, however horrendous, it will be relevant and inform people who maybe facing something similar. The whole point of this lovely forum is to inform and support each other. I for one would be very interested to learn about what you went through.
I agree with SJ - warts and all on this forum! I will not say that something is fantastic when the evidence is it is possibly otherwise. Too many patients complain no-one told them the horrors in advance - usually it is about pred but even pred isn't all bad!
I'm in a very similar situation, having to ditch TCM because of diverticulitis (a rare, but known side effect). My rheumy switched me to leflunomide. That seems to be working okay, though I did just have a flare.
You are much better at finding out what’s what than I am. I could find no reference to Diverticulitis in my reading around Tocilizumab/Actemra. Only Abdominal pain.Diverticulosis only, was found in my colonoscopy and the doctor says everybody in our age group has that. However, the pain was awful and the other gastric symptoms quite dramatic. Part of the problem is, there isn’t a wide understanding of these drugs, my GP can’t even pronounce it. No evidence of infection was found in other tests. The symptoms however, are exactly as I would imagine diverticulitis to feel like - an acidic drink and a roar of pain. I prefer Leflumonide, from what little I know about it, to what I have read about Methotrexate. Let us know how you get on. Was your Diverticulitis diagnosed via a colonoscopy or the symptom picture? Many thanks!
Surprised at that. Just google "actemra diverticulitis," and you'll get tons of hits (ditto "tocilizumab").
I started out with diverticulosis as well. Didn't even know I had it. That came from a fairly standard colonoscopy several months before the diverticulitis.
The pain of the diverticulitis, on the other hand, was unbelievable. Couldn't move, ambulance was called, straight to A&E, shot me up with opiates ...
I was treated with high-dose antibiotics, sent home, and seemed to be doing a lkttle better. It really hadn't cleared up, though, and my very excellent GP had a bad feeling about it all, so sent me for a scan. From that, we learned I had a perforation and a 4 cm abscess. Straight to hospital again (though my wife could drive me this time).
They zapped it with anti-biotics again, and I felt very lucky to have dodged surgery. So far, so good. Knock on wood, cross my fingers ...
Wow! My search has been “Tocilizumab side effects”. I must do better searches. You do sound as if your diverticulitis was much worse than mine. I was in quite a lot of pain stemming from the appendix area and spreading across the lower abdomen. I worry that there is a coin sized area of pain that is always present, very low level, but there for years. At its worst I wonder about an ulcer or abscess. I was told that only age related diverticulosis was visible and the doctor suggested that the pain in my lower right side could stem from my hip. This seems doubtful.I am so glad you avoided surgery and thank you so much for sharing your knowledge and experience with me. I had an injection of Tocilizumab this morning to see if I could halt a flare, the pain in my abdomen is back, mildly but enough to warn me to stop Tocilizumab and take advice about an alternative. It gets very complicated to outline all your relevant symptoms in a short consultation. I will need to take a crib sheet. Thanks again for your time. Keep well.
I think you’re aware of my diverticulitis history. I did have a CT scan last July in the ER and a wonderful gastro surgeon went over the results with me saying I had a phlegdom in my lower right Sigmoid Colon and diagnosis of diverticulitis.
2 months ago second diverticulitis infection the ER dr guessed given similar symptoms (chills, low grade fever, some nausea), so given 2 types of oral antibiotics again (which caused me to stop my Methotrexate), but no scan or follow up. Rheumy said MTX does not cause or exacerbate diverticulitis, but steroids do (along with being overweight and genetic predisposition-which apply to me too). The pain was located in lower right abdomen this last time. Had to follow bowel rest diet again. Holding off on MTX for 3 weeks before this 2nd infection caused return of PMR symptoms.
Recently my GP looked over everything and pushed for a follow up colonoscopy by gastro surgeon this July (after I have an MRI of pancreas as they found a small spot that requires a follow up scan). It didn’t happen after initial diagnosis due to COVID and testing issues. His view of the big picture made sense given my PMR, pred use, MTX, and diverticulitis. He said to focus on 3 things to help with all of my conditions/medications:
1) lower weight
2) lower pred dose
3) drink plenty of water
All this to say, like you, the addition of other diagnosis, and new medications can make things very complex. Figuring out a way forward is difficult, especially when we do not have the guidance and direction of a rheumy in a timely fashion. I waited 8 days for a call back from mine to discuss when and why to hold MTX, now I know it is working because I stopped it and symptoms returned in about 4 weeks. She also told me what to do if I flare on MTX (wait 5-7 days, if symptoms worse up 1 mg pred, get bloodwork and call her office).
If indeed Actemra does not work due to gastric issues, you could try MTX, although you’ve identified that you would prefer Lefluedomide (sp?). I was terrified to try MTX, but after 2 years stuck at 9mg, I felt I needed to try something. To my surprise I’ve had no side effects and have tapered down from 9mg to 7.5. The nice thing is you can stop if it you do not tolerate it well.
You are between a rock and a hard place. Stop the Actemra and other symptoms re-emerge. Continue the Actemra and have continued abdominal pain. I know you’ve had a colonoscopy, but what about a CT scan or MRI of your abdomen? Perhaps this would provide some insight. I was also wondering if Tylenol or other pain medications help with the emerging symptoms. If so, perhaps you won’t have to increase your pred dose??
Agreed, life on 9mg of pred for 2 years was so simple and pain free. Now it feels like figuring out a complex puzzle with some of the pieces missing. I sure do hope you figure it all out with the help of your medical team and perhaps some more diagnostics.
You have just described my situation in a nutshell. Interesting about Methotrexate. It is a real bogey man for me, along with Alendronic Acid and its’ family. My Rheumatologist has wanted me to take Methotrexate for a very long time. I appreciate your sharing your story. It is very relevant. Thank you for taking the trouble to share it. I had an ultrasound scan of the abdomen, looking at the ovaries and the colonoscopy neither of these investigations showed the cause of the significant pain. I am always thirsty, so plenty water.
Diverticulitis!!......when I started this journey Jane...there was no quelling the symptoms of GCA...even on 125mg of prednisone..then hospital, more 1000mg of methylpred for three days...the 80mg of methylpred per day....nothing stopped and one eye was gone. In the past I had two serious diverticulitis attacks but the doctors and I were left to give Actemra a try. He explained all the side effects... plus this was October 2019...and I started.
Has the origin of the abdominal pain been identified....with diverticulitis, I would hold my stomach like I was 8 months pregnant for relief.....lower left~! When I have a colonoscopy, this February was my last, my colon looks like a honeycomb or swiss cheese....I make sure I keep things moving...if you get my drift...and no seed, nuts or popcorn. I swear by Swiss Kriss and of course...Amazon has it.
Thankfully, I've had no problem with it and not all kinds of infections. Once I was off TCZ for three months (last June I think, 2021) because I had cellulitis but back on it weekly since.
It is a conundrum for sure!💕💕and a BIG 🎂🎂🎂 HAPPY BIRTHDAY!!
Oh Grammy, whatever next. Thank you for your good wishes. I think I was talking to you when it turned midnight and I got a birthday hug. So that was very nice. 💖
I understand that the seeds / nuts / popcorn / fizzy drinks really doesn't apply any more. Just to be safe, I adhered to those guidelines anyway. I've since reintroduced them to my diet one-by-one, and things seem to be fine.
I was easing off on the extremely bland diet then I had a TMZ injection and the pain began to creep back. Not quite back to square one but convinced that I cannot carry on with this drug. Your help and guidance is much appreciated.
Very helpful thank you! I haven’t had the opportunity to discuss the Cardiologist’s findings yet. I believe my Rheumatologist is on professional leave. We have only briefly touched on Psoriatic Arthritis - I think I thought life was fair and I could deal with one thing at a time. Alas, this is clearly not the case.
I have briefly read the material in your link and realise that my symptoms do fit the Spondyloarthritis family of diseases, the eyes, the bowel, back pain, psoriasis, heel pain etc. I think some of this is a relatively recent and unwelcome addition to my symptoms. The intestinal inflammation possibly being the last piece of the jigsaw. Thank you for pointing me in this direction. It feels a bit like a tangled ball of wool at present but I will study further. Thank you.
For what it's worth, and as you know I have no experience of TCZ, I've had quite a lot of pain lately with one thing and another, like shoulders, feet, etc. Taking 3 mg pred and efforts to go to 2.5 eventually always fail these days. Last night because I had the type of headache which doesn't respond particularly well even to my go-to painkiller, aspirin, and I had no low dose acetaminophen+codeine on hand I took a tablet leftover from my hubby's eye surgery. Expired in June, 2020. Included equivalent of one acetaminophen tablet + 30 mg codeine. This morning I woke up still with a residue of headache, but, and this is the point, NONE of the other aches and pains. This has surprised me. And is also a bit worrisome as I know this is not the way I want to go with medication. But it worked! I shall be interested to find out whether the effect lasts longer than a day. Perhaps a pattern will have been broken?
That is an importnat feature of pain control - and why post-op pain management MUST be optimum and often requires an aggressive approach. Whether you think you need it or not. A GP friend who had done anaesthetics training but found the exams a bit too much said it was the most important thing he learned.
Every now and then I think that I have found the recipe for success in pain relief but disappointingly my solutions never seem to last. A sleep is the most enduring help these days. I wake up in a different frame of mind. I’m sorry that you have a lot of pain at present, it is very lowering.
I did sleep very well last night, sure that helped! I'm so much better off than many on this forum that I really can't complain. I just thought it was interesting that one moderate dose of codeine seemed to be so helpful! Too bad there's always a catch with a pain med, no matter what it is.
Oh how miserable for you Jane! Ordeal after ordeal to cope with. I’m so sorry you are having to deal with so many issues all at once! It sounds so difficult. I’ve appreciated your kind and sensitive comments so much, I hope you find some release from the hamster wheel soon! I’m Thinking of you, and picturing you healing and enjoying life. 💖🥰🙏
That all rings very true to me too and yes you are right, there are many worse off than me. I have been having a bit of a pity party today. I am grateful to everyone for sticking with me.
Well at least I know now. I wasn’t told of the risk by doctors and a colonoscopy didn’t show it, but it walks like a duck and quacks like a duck so I think I will proceed as if it’s a duck. Gastric perforation was characterised as a very rare side effect in the material I read. My pain and gastric symptoms were not a light bulb moment for any of my doctors. I thought it was persistent gastritis due to being immunosuppressed. I’ve got a feeling that Methotrexate and Lefluonomide may also impact negatively on the GI.
The risk is in patients with PREEXISTING diverticulITIS - not diverticulOSIS. Pretty much everyone will have some diverticulosis at our age but only about 1 in 5 or so go on to develop diverticulitis. The risk then is because TCZ and steroids both suppress the pain of the inflammation so there is less warning of trouble or it appears less serious. So a low threshold of suspicion is required.
That grounds it but I had 4 months of pain, quite severe at times, that went 4 weeks after stopping Tocilizumab and eating bland food in small quantities. Nothing discernible in the colonoscopy and the doctor said the same as you about our age group and diverticulosis.
Be careful of leflunomide !! Serious side effect is peripheral neuropathy. Methotrexate I would not recommend either. I i’ve decided to taper slowly using Dorset lady tapering method using no more intervening biological drugs and hopefully I will get on the lowest dose possible for me. Everything we take has side effects I will try and keep mine to a minimum.
Same here. Sometimes they feel worse than the disease they are supposed to treat. I was very lucky with Pred for 4 years, even now the side effects are insidious. I feel nothing but my blood pressure and blood sugars are high. Good luck aladymo, you have been through enough.
I have no advice Jane but I feel your confusion, pain and sheer frustration at what next steps to take. I do hope you will be given good steering on this and for the future. Hang on in there, I’m sure things will start to get better and settle down. Will be praying for you; you have been through such a lot. 💐💐
Jane, so sorry you are having all the added problems and that your trip to London was somewhat spoilt. It’s so frustrating when one looks forward to a special treat/time away. Do hope you will find some kind of relief. Unfortunately I have no idea…. Thinking of you and sending love. xx
Hi Jane, your problems are so complex they must overwhelm you at times…😵💫. It is my 77th birthday tomorrow and as I will be on my own have just opened and eaten seven chocolates……
Sending you all my good wishes and hugs for a lovely day. Jen x
I know we've been talking a lot about diverticulitis here. Probably an even greater risk, though, is bowel perforation. Sounds like that happen in 2.7% of all Actemra patients. (Leave it to me to be among those!) Here's what's really scary though ... In general, bowel perforations have a fatality rate of 30%.
"Person years and person months are types of measurement that take into account both the number of people in the study and the amount of time each person spends in the study. For example, a study that follows 1,000 people for one year would contain 1,000 person years of data."
Thank you so much. None of the doctors I encountered, including the one who performed the colonoscopy observed a red flag in relation to my taking Tocilizumab over a two year period as being significant in my abdominal pain, let alone a potentially life threatening condition albeit a rare one. I think it would be good to highlight this in FAQs. Especially as more of us are being prescribed this drug and doctors do not seem alert to it in general. One dose of Tocilizumab, after a 4/5 week gap has brought in me, a reoccurrence of gnawing abdominal pain with bowel upset that I know can become severe.
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An update on my tocilizumab experience.
Does anyone know anything about tocilizumab?
Reducing tocilizumab injections
Can you 'demand' Tocilizumab for GCA?
Tapering on Tocilizumab (Altrema)
