The main thing I have noticed is a proneness to infection, like UTIs, sinus, nasal and Blepharitis. This will be because my immunity is so firmly suppressed what with Prednisalone and Tocilizumab. I was able to quickly get down from 40 mgs of Pred to 10 mgs without the usual PMR type pains or any flaring. I was grateful for the opportunity to try this drug that has proved effective for our conditions in research studies. I am aware that it is eye wateringly expensive.It is important that you do not have diverticulitis because a study has shown that you are more prone to the lower intestinal tears that is one of the scary side effects you read about. There have been discussions about this in recent days. I hope you caught them. I have asked Mrs Nails if we can have some information about Tocilizumab in FAQs, she will look at this after Easter. It is good to have all the discussions in one place.
Personally, I have had lower abdominal pain for the last 3 months and following a colonoscopy, diverticulosis was found - older people often have this without symptoms. In view of the pain and the slim chance that it may make me prone to a lower intestinal tear, I think I am going to stop Tocilizumab a bit before my 12 month allowance of it is finished. It is actually diverticulitis that puts you at risk not the ordinary, infection free diverticulosis that my doctor called “ wear and tear”. I am being cautious.
Prednisalone is also very harsh on the digestive system and I had 4 years of that before my GCA/ LVV diagnosis.
I understand the fear about your precious eyesight, I share it. I visit my well equipped optician for a thorough eye check every few months. Thankfully nothing untoward has ever been found, including today.. I think that my Large Vessel Vasculitis is of the peripheral artery type, and is extra cranial, abnormal cells were only found in the arteries of my left armpit, so far.
Sorry for such a long reply, I hope it is not too muddled, this is all very much on my mind today, having decided to give up Tocilizumab. I would hate to put anyone off what could be a great drug for them. Certainly ensure that your epilepsy drugs are compatible and be careful of your gut. X
Written by
SheffieldJane
To view profiles and participate in discussions please or .
Thank you so much for sharing your decision and the context behind it. You and others contribute valuable personal lived experience of living with PMR, GCA, and LVV on this forum, and all insight is welcome with the understanding that our bodies are unique in how we respond to medications, what our health history is, what supports we have in place, and so on. The treatment options for our conditions is limited therefore we often have common ground in what we are prescribed and in the treatment directives we receive from medical professionals. Your contributions in this post certainly don't sound disuasive.....you have made the best individual health decision for you. 3 months is a long time for you to be experiencing abdominal pain! Sure hope that it resolves itself (perhaps with stopping Actemra?).
As you know I'm struggling with diverticulitis presently, and learned of it initially last July. Not really surprised as I tick the boxes for a number of causes (genetic: my dad had surgery for it, mom currently has it - overweight: yep - steroids: pred for four years). It will take time to address the latter two potential causes, but in the meantime I wouldn't want to onboard any medication that would worsen my gut health.
I may never get to try Actemra as a treatment for my PMR, however now, at least, I am informed of an important side effect as it relates to my diverticulitis and autoimmune condition. Thank you once more for sharing.
I has been very wearing. I don’t think I’d take it in your shoes either. Winfong’s experience of a low abdominal tear sounds very challenging. He’s getting better though.
Jane, so sorry to hear about your abdominal pains… something else to worry about and suffer from. I too have diverticulitis and have been on Tocilizumab for over a year, to help with RA. My rheumatologist was aware of the diverticulitis… but my RA was so out of control and the inflammation so high, I needed a new treat.I am worried about abdominal tears because for a week now I have been experiencing pain in my abdomen, a bit like cramps, very unpleasant and painful. I would like to know more about this, where can I find the information please? You mentioned Wingfon having such serious problems… how can I check this person’s profile in order to learn more?
I do hope you will be alright once you’ve stop using Tocilizumab… it is so difficult when one has so many serious health issues. Take care x
The basic rule is that a very low threshold of suspicion is required for a flare of the diverticulitis - you wouldn't be wrong to seek medical advice now if you think it could be a flare.
Thank you. It is difficult getting in touch with a GP at the moment and this is how one proceeds in order to be referred to a consultant… many GPs have Covid atm. Will keep on trying because I am worried.I don’t know anything at all about abdominal tears and how serious this can be… could it lead to sepsis ? Where can I find more information apart from Google? It would be useful to hear from someone who has experienced this. Never had this before.
I'm well aware of the problems getting to see a GP and how to get to see a specialist in the UK. Unfortunately - what that may result in is an emergency admission to A&E at a point where it is too late to sort it out easily. My daughter (in the ED) says she hears "I can't see my GP" at a point where the patient is now proper poorly.
Thank you for the suggestion. My experience of 111 hasn’t been great I am sorry to say… but I might give it another try if I can’t see a GP soon. Thanks again.
Always worth a shot - if you go to the loo first, make a cuppa & have something to read or watch on the TV while you wait.
I pleased to say that if you are under 5years old -(it doesn’t help us) but you are fast tracked! They sent the Paramedics to Theo who took him to hospital & they admitted him from A&E so l’m pleased it works for the little ones 🙏🏼
My experience of 111 was Saturday before last . I woke up with shingles on face and eye. It took 40 minutes for someone to answer but the lady was very pleasant snd jolly. She took all the info and said a doctor will ring back in 2 hours, she then clarified it by saying it could be “a fluid” 2 hours. It was 5 hours but the doc was very kind and patient, after viewing pictures he made me an appt at local hospital. I was seen by another very thorough, kindly doc at 8:30 and I was given antivirals to start that evening. So my experience was a positive one but I have heard of other unpleasant stories like yours. I really hope you get your mind put at rest soon. 🤗
Thanks for contacting me. How long did it take from the time you contacted 111 and were eventually seen by a doctor in hospital ? It’s a doctor’s role to be kind and patient, if not they’re in the wrong job. We know quite a few in that situation.Pleased you could be treated and hope you will recover very soon but it does take time. I had singles on 1st January 2021…. and I still get itching from time to time. It can take years for nerves to recover, so as my GP told me. It might be sooner for you. Best wishes.
Sorry for delay I didn’t see your message til now. Spoke to assessor just before 2 then saw second doc in local hospital at 8:30. The appt was made for 8 but he was a bit behind. So about 61/2 hours. Yes it will take time to heal. All the best 🤗
Just one last thing. The assessor asks how its affecting your everyday life and ability to care for yourself, so I would assume a more serious health issue would warrant a much quicker response 🤗
You’ve had good advice. That sounds like my pain ( not settled completely) I had a colonoscopy and nothing sinister was found, just wear and tear diverticulosis not the much worse diverticulitis. However, the pain has been serious enough for me to stop Tocilizumab. They are particularly concerned about blood in your poo or bacterial infections. I have neither. Winfong had to have an operation to repair the tear. He may spot this. I couldn’t find him but he very kindly found me. This is what is great about FAQs, you can actually look up a symptom/condition and find the relevant information and discussions. A&E would take you seriously with your background and the drug you are on. I was referred to Endoscopy department by my GP and was seen for a colonoscopy very quickly - you have to do all the ghastly prep that you will be familiar with, so that may be a better route.
Thank you for replying. Yes I have been given good advice indeed. But you’re experiencing similar symptoms to mine, have diverticulitis as I do and are on Tocilizumab like me. So I think I simply might have to contact 999 and see what happens. It only started a few days ago but it is an odd kind of pain and being aware of the side effects of Tocilizumab it is concerning. Will try my GP again tomorrow and if no chance I’ll contact 999 and see what happens. It would be wonderful if Wingfon found me as he found you…
If you want to contact him - go to My Hub, PMRGCAuk and Members. Type in the name and it will come up with a selection of potential members. And you can message him
Yes, I have already mentioned his name in Jane’s post… As mentioned to PMRpro I am going through the list of members… Wish someone would remember his full membership name. Fingers crossed. Thanks again. You’re all so helpful and brilliant.
Please try not to get into a panic. It is quite a rare side effect. Symptoms of a lower intestinal perforation can include the symptoms of shock, dizziness, nausea and chills. In that case I would either go to A&E or phone an ambulance. I think my pain is caused by an inflammation of the intestine a flare up. My recent colonoscopy just showed the wear and tear that most of us have later in life. As a precaution I have stopped my Tocilizumab and told my Rheumatologist why.
Yes, I am trying not to panic, monitoring my temperature and other symptoms. However it is concerning because I have diverticulitis and have been on Tocilizumab for over a year on weekly injections and I have never before felt such strange on-going abdominal pain… Will try to contact my surgery again tomorrow. It seems to have lessened a bit but still present. Could it be a bout of enterogastritis? But no diarrhoea. Strange. I hope this can be resolved soon.
My symptoms are mysterious too. Hence the Colonoscopy. I am no further forward really and still have pain and sensitivity. I am eating a pretty bland diet which helps and small portions. I expect that Pred doesn’t help much either. My GP suggested a possible gynaecological problem, like an ovarian cyst that can cause these kind of symptoms. An internal and external scan did not show anything significant though. I am awaiting a low priority referral . I hope you get a resolution soon.
I suppose if they can’t find a causal effect they suggest another possibility, just to be on the cautious side. Last year, from October to December I had abdominal pain but in a different way and more on one side than the other, then having to rush to the loo often to pee… several urine tests indicated haematuria (was also feeling weaker than usual) so I saw an urologist and gynaecologist, had ultrasound test and MRI of urinary track and ovaries, nothing nasty but found I have kidney stones in both kidneys (which apparently is unusual) their size is 3 mm, so nothing done… they only remove them when they reach 5 mm… doesn’t make sense to me, why not deal with the problem when small preventing further problems ? Had colposcopy of neck of cervix and other gynaecological tests which were ok. So reassuring but didn’t explain the problems with the exception of renal stones. Perhaps it is what’s now causing the problem… I always have dreadful back pain because I have sacral insufficiency fractures (excruciating pain making walking and anything else most difficult). The trouble with doctors, either GPS or consultants is that they do not communicate with each other when a patient has many issues, just working in their little box…. So now when I go and see a consultant I take a file with me and ask them to read the information. Otherwise they don’t really look in hospital files, especially when there are so many….
It’s quite a long time since I have had a colonoscopy… I would have thought my rheumatologist, being aware I have diverticulitis, would request one to ensure no new problem has been caused by the use of Tocilizumab and steroids (nearly 4 years), but they don’t go the extra length!
Actually I will contact my rheumatologist (haven’t seen him for ages) and request he refers me for a colonoscopy (not that I especially look forward to that nor the preparation… yuk). Patients should not have to push for help all the time… yes, i know there’s a huge backlog in hospitals atm because of Covid but having to push isn’t new to me…
It does feel better today but still present, so will keep an eye on the situation and will contact my rheumatologist when he gets back from holiday next week. Have given up on GP.
Hope you can find the cause of your problem. Let us know. Take care.
You really do seem on it. I don’t see what more you can do, that you are not already doing. Great idea about the file. I agree with you about different specialisms working in silos and not communicating. We have to progress chase everything. I have just had a letter from my Endocrinologist out of the blue , with a plan to get me off Prednisalone. He is not considering any underlying disease process, just the effects of long term steroid use on the Adrenal Axis. I am not sure what my Rheumatologist will say?Did you know that Adrenal insufficiency can cause abdominal pain? Another wild card probably.
I am sorry that you have to monitor so many painful medical conditions. I sometimes feel that doctors abdicate when it gets too complex.
I think a colonoscopy is a good idea for you for all the reasons you state. It will highlight any Tocilizumab damage and thereby put your mind at rest. Keep us posted and good luck.
No i had no idea adrenal insufficiency can cause abdominal pain… Whenever I mentioned the possibility of adrenal insufficiency to my GP she finds ways of deflecting the subject. One wonders why they are GPS. To be honest I am tired of always pushing for help… it’s exhausting when one feels so ill. But I can’t let go. As you say when a patient presents with so many problems and they’re past the age of 70 and perhaps being a woman, they don’t seem to care. Too much work for them, so take the easy route…. What I find quite bizarre is that they all remark ‘how active my mind is’…. because I will ask questions and expect answers… perhaps they prefer people whose mind isn’t working so well. Easier to fob off perhaps… and ignore.
I tell them I was a linguist, using five languages plus a smitten of Arabic but can only claim fluency in only two languages now… then they start to show a bit of respect. My mind, although not as sharp as it once was, is my best asset! Everything else is falling apart. Such is life.
Regarding prednisolone I am titrating slowly. Am on 6 mg now… I really need to get off it altogether, having serious problems with osteoporosis. So fingers crossed. Do you think you will be able to stop using it? Surely your Endo doesn’t want you to just stop it cold turkey?
We have to keep on fighting in the hope of getting the help we need. 🌻
No no he has a plan of reducing by half a mg every 4 weeks, sounds familiar? He won’t do a short Synacthen test until I get down to 5 mgs. He emphasised that I must abide by the sick day rules, see FAQs. That is quite usual and when you should start pushing for a test. The Pred in our system is doing the job above 5 mgs, so tests tend to be inaccurate. He is a really bright man who loves his subject, he draws diagrams and loves to explain the complexities of the Adrenal system. It does not deal with the fact that without Pred we may have rogue inflammation doing damage however.You could probably add a smattering of medical science to your languages now. I don’t think our generation of women is prepared to be patronised or brushed aside by a traditionally patriarchal medical system anymore. Certainly the women on here give me the distinct impression that we expect more.
That’s reassuring about your steroids reduction. Yes I usually tend to use correct medical terms … to be honest I have always done so because that’s what I used to do in France where I come from… I remember being quite shocked when, aged 19 I first saw a GP in the UK referring to tommy pain… just a childish term… Anyway, yes we’ve moved on a bit since 1966, but I still hear this vocabulary being used around… old habits and all that. Whilst we certainly do expect more the habits of decades of medical arrogance are hard to break. However, younger doctors seem to be better at communicating with people as long as one gets totally engaged in their health issues. I have always done so. Your Endo sounds quite good…. Not always the case.
So once I reach 5 mg steroids, I should request a synacthen test from my GP? She prescribed these to me in July 2018. I keep her posted on my titration levels. However she never once mentioned I should have this test once I take only 5 mg/day…. I really wonder what they’re taught at medical school, I also guess they forget many things once qualified, although they have to do refresher courses… it’s up to them I believe (up to a point). She has admitted to me in the past that she forgets the name of things…. She’s 50 now… I suppose they’re like all of us, getting older and tired but a bit concerning when it comes to one’s health.
Regarding the abdominal pain, today it is better until I eat… then problems begin again, not as strong, and the need to go to the loo (number 2, sorry too much information) but not loose so perhaps it’s a gastroenteritis situation… but no idea what brought it up. No sure how long it will last… keep on monitoring everything. Not exciting…
Eating also triggers a loose bowel movement for me, I dread it when my body tries to counteract this, like they do. This really hurts. I go maybe half a dozen times a day. Any sort of spice, tomatoes or peppers cause a burn for hours, stemming from my appendix area on the right lower abdomen, then spreading across the whole lower area, affecting the bladder also.Not appendicitis, not sore when pressed. Mashed potato, white rice, boiled eggs, soft white bread, milky things seem to be best to eat currently.No leaves or seeds, nuts etc. all my healthy fibre things. I definitely think that Adrenaline care should be part of our recovery programme on doses under 5 mgs. My Endocrinologist says that a deficiency will cause joint pain, possible fever nausea and fatigue, possibly dizziness too. It sounds pretty much like one of my bad days. Then of course he wants me to carry a steroid card or wear a bracelet to indicate that I am a long term steroid user. He emphases that any illness involving antibiotics or fever and I should double my dose. I have done this following my abdominal symptoms and headaches now - quite rocking headaches. Following the double dose, I look and feel brighter and could not nap like I usually have to do. My husband said that my moving is much better. Pred and me have to part though. I did have a better evening. My husband had a tooth extraction so I fussed over him which made a nice change for me and he lapped it up.
When one has many complex health issues it makes life pretty tough… Sometimes not sure what is causing a problem. At times I find it frustrating when I can barely stand up for the pain in my back (sacral insufficiency fractures) and my fingers and wrists are so painful I can’t even shower or get dressed so spend days in pyjamas and dressing gown, which I don’t like as for cooking it’s so difficult as I still try to cook everything from fresh, plenty of vegetables and fruits etc. I do keep the odd precooked prepared meals in the freezer for the days when I can’t do anything at all. Good Health is wonderful and naturally taken for granted.Goog to know you’re feeling a little better.
It’s late again.. so off to bed. Hope you can sleep well. Hope I can too, so many times I can’t because of pain. So fingers crossed for both of us.
I must sleep too. I am in bed. I think we both feel less alone. I even get severe low back pain if I stand or walk for too long. Plenty of Spondylosis in the upper part of my spine, so perhaps it is now in the lower discs too. Soon there will be no part of me that hasn’t been scrutinised. Sleep well. Tomorrow is another day as Scarlett says.
I should have read this, Jane, before I inquired about your decision to stop TCZ. I've had two bad bouts with divertiulitis in the past which was the reason they didn't even suggest TCZ until it was a choice of sight or 'rush to the hospital if your belly hurts'. The doctor outlined the risks to me and I was scared but had to choose sight since I'd lost one eye already. Thankfully, I've had no further issues with diverticulitis though the colonoscopies show all the diverticulosis. I do not eat anything I think could nestle there.
Regarding the comment about epilepsy, I wanted to elaborate. I have epilepsy and have been seizure free for 40 years. I was diagnosed at age 15 having had grand mal seizures that year, one alone in my bedroom and then fortunately, one in front of my parents. I'd been on a very low maintenance dosage of meds for many years when I was diagnosed with GCA and started steroids. I began to have auras and strange sensations I'd not had for a very long time. I was told that the prednisone waters down the effectiveness of anticonvulsants and was put on 1000mg of Keppra per day~~which was later increased to 2000mg and have had no issues since. Probably I should write a post about this...hadn't thought of it and if I did, I forgot!xo💕💕
It would be a good idea to share your experience of managing epilepsy with PMR/GCA. My post was copied from a reply to someone who is facing decisions about this now, she has concerns about the side effects of Tocilizumab and Fosamax in relation to her anti-epilepsy meds. It was a recent post. If I remember right her name was greytree. X💖
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.
Can you 'demand' Tocilizumab for GCA?
Ankle and lower leg pain?
Lower back muscle pain
Hip and lower back pain
SEVERE LOWER BACK PAIN
