However, now feeling pain in shoulders so wondering if I have to go back on Pred? Hateful thought as it ruined my body and still recovering
New here. Diagnosed gca December 2019 and just fi... - PMRGCAuk
New here. Diagnosed gca December 2019 and just finished Prednisone 3wks ago. Rheumy started me on Tocilizamob as she said it replaces the Pr
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jarn
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DorsetLadyPMRGCAuk volunteer
Hi
TCZ - is used in conjunction with steroids for GCA - but it does not replace the steroids - this is UK information - and as far as I’m aware it cannot save sight, which Pred can, and does -
bnf.nice.org.uk/drug/tocili...
Just as a matter of interest, how did Pred ruin your body?
Perhaps I mis-heard, but will check with her next week. I started with 100mg Pred in December, (after GCA diagnosis) & did lose sight in one eye; then reduced to 60mg one month later. Just wreaked havoc on my body: thinning skin which would tear when I bumped into something; difficulty keeping balance, etc etc and told that Pred is just the main cause of all the changes. Hate thought of having to take more, but started feeling the PMR pain in my shoulders last week. Had hoped that the Tocilizimab would offset. Thank you for responding as still trying to figure it out.
Had you already lost sight before diagnosis (like me) or after starting the Pred?
Going from 60mg to zero within 5-7 months is so fast, it’s almost supersonic!
Personally, although I’d like to be proven wrong, I don’t think you have any option but to go back on Pred - not the very high doses as before, but enough to clear out the inflammation is obviously building up again.
And to be honest, if it were me, I wouldn’t be risking the sight in my remaining eye. The side effects you mention are a nuisance, being complete blind is a life changer.
On Mon, Aug 3, 2020 at 9:11 PM UTC, <jmok7@shaw.ca> wrote:
p.s. Couldn't access the link you sent as only available to UK residents (I am in Canada)
Ok, see if I can find another
Yes. Had gone for annual eye exam (optometrist), 2 days later was having double vision, so returned & asked why?? They found nothing wrong and the next morning, woke up with no vision. So off to local hospital, and they consulted with opthamologist who immediately put me on the 100mg until I could see the neuro-opthamologist which was 2days later. By then, he felt that the biopsy was unnecessary because he could see that the vision was gone. Thus, started with 60mg Prednisone and gradually lowered it to 0.
Initially, Rheumy also put me on Methotextrate but had me tested to see if I could do Tocil; then started the TCZ 3months ago while I was weaning off of Pred. So only doing the TCZ currently, but as I said, got concerned this week when the pain in shoulders started. Flashing back to PMR. Does it ever end?
Since doing TCZ, am experiencing swelling of ankles/fingers etc. so thinking it may be result of the meds. My GP did test for any heart pbms etc. which was nil. Have never taken any medication in my 78yrs at all, except for Pariet, so this is a real pain to get on the medication wagon.
Thank you so much for responding.
J
It does end yes, but in its own time..,and that usually a lot longer than doctor think and some of the guidelines say.
TCZ is not used as widely in the UK as it is over your side of the pond, but there are a couple of patients on it who are in US and hopefully they’ll be along to advise idc.
Dvicd
Well, as to Pred ruining my body (at least said it was the effects of the drug); thinned the skin on my body so that when I bumped into the wall, big tears on arms/legs. Affected my mobility, in that I had to use a walking stick to stabilize; shaky limbs
Some of what you experienced may be due to coming down so quickly on the Pred. I’d had PMR for 6 yrs when diagnosed with GCA. Started TCZ a year later when I couldn’t get below 20mg. Then took a full year to taper off Pred. Only by tapering slowly will you know the TCZ is working. In some folks both are needed but Pred can be at a much lower (manageable) dose. Unfortunately these conditions don’t follow the 2 yr timeline that many physicians ascribe to!
Interesting and I thank you. Makes more sense from what you've told me. Will be talking to my Rheumy next week. Sorry to hear that you are stung with GCA but hopefully, got it in time to avoid blindness. Interesting that you were on Pred for all that time and then got hit with GCA. Quite a journey, isn't it? I hadn't heard of the 2yr timeline for tapering, so will certainly discuss that too. In 2018, did have PMR but after a month of Pred at 5mg, it seemed to go away. Sadly, by Dec 2019, woke up blind in one eye and then diagnosed with GCA. Mega doses of Pred to rid the inflammation, but didn't make my body happy. So rheumy then prescribed the TCZ which I took with the Pred until tapering . Thanks for your input
I didn’t know that it was indicated without Pred for GCA. I sort of imagined taking them side by side but getting off Pred much faster. This is what is happening with my treatment plan. Do you have any other conditions and how are you generally?
I am on my 4th self administered injection of Tocilizumab this Friday and 12.5 mgs of Pred going to 10 mgs in a week. Very tired with the odd twinge.
Unhappy stomach and very sore eyes - recognise any of that?
Yes, was on both for 3 months while was being weaned of Pred. Am on my 7th month of TCZ, and off the Pred for 3wks now. Outside of swelling of ankles (since started the TCZ), no other effects and was always in top health. Never on any meds until GCA. So was shocked. Apparently a relatively new Drug in Canada & she put me through a few tests to see if I qualified. Anyway, hoping that I don't have to resume Pred but as Dorset said, better to put up with a small dose of that rather than losing the other eye. I had PMR a year ago which only lasted about a month and was only on 5mg Pred. Perhaps I'll try that. My Rheumy is on holidays until next week, so will check with her then. Thank you for all your comments.
I started the actemra last week. Do you think it has started to help you yet?
Well, as I said, both my GP & Rheumy said the blood work improved greatly but still a long way to go!
Too soon to say really. I feel positive about getting off the hamster wheel though. My taper from Pred. Is not too bad, though fast.
Hello. Well, after first week of 100mg, went to 60mg and stayed there for 2 mos? Rheumy did advise that she didn't like me on the Pred and when she referred the TCZ (injection weekly), was extremely happy with the Lab blood work results, and object was to keep taking both of these until I could taper off the Pred. Dec started 60mg; Jan 40mg; Feb 25mg; March 20mg - 15mg; April 12.5mg; etc etc to 0 in July.
Was feeling improved until this week, when shoulder began to ache, so thinking will go back to 5mg until my Rheumy returns next week. Have regular monthly Lab work done & both GP & Rheumy happy with the progress. (what do I know?) My neuro-opthamologist is in agreement. Am also on Alendronate once weekly and every night take a baby aspirin.
Your input very much appreciated. My limbs are very scarred up from the effects of Pred (the thin skin bruising/tearing so easily) Hair thinned out mightily as well.
As stated, have enjoyed excellent health for 78yrs, no meds, until this. Thus very frustrating and confusing. Thank you for your input.
Have you had a DEXA scan, or do you know if you have osteoporosis- if not then get it checked - you may not need AA. It’s just another medication added into the mix, that’s not always required....a Calcium/VitaminD supplement may suffice.
Yes, to scan and no osteoporosis (so far); my team of doctors just trying to be preventive I guess, as also take one baby aspirin every night. Keeping fingers crossed that all of this helps. Have been doing Vit D for about 5yrs now but have not done the calcium because not sure about the side effects of that one: try to control by eating more greens etc.
I am so sorry to hear of your terrifying and horrible experience and you must still be so shocked. This Forum will be invaluable to you for sharing what’s happening to you with tips for how to deal with it. My left leg has a map of scars from brushing against surfaces and a couple of falls - skin like tissue paper! I have a do it yourself first aid kit just for those now. Pred side effects are an inconvenience but ease the dreaded incapacitating pain - and if it can save your remaining eyesight it’s a miracle drug. The very best of luck and warm wishes 🌺
Thank you for sharing because it seemed that I was the only one who ever experienced these symptoms from the Pred. Dreadful indeed and not only are my limbs all scarred, but it was the incapitation of using my body! Have always been athletic, and to find I needed to use a walking stick for balance, was shocking. Seemed to happen overnight. The last couple of weeks are showing progress and actually getting out in the garden, although cannot get up after squatting, without great effort. Life is a new experience. Do appreciate others sharing their experience. Am sure you have discovered, that you cannot use bandaids or anything that is adhesive, as this tears your skin when you try to remove them! Good luck to you too,
PMRproAmbassador
Tocilizumab doesn't always replace pred - but it does allow the patient to get to a very much lower dose of pred. In the GCA trial only half of patients were able to get off pred altogether, half needed a much lower dose but still required some pred for full symptoms relief. This is because there are three different underlying causes of the inflammation and only one of them is dealt with by the tocilizumab and if either of the other two are present only pred deals with the inflammation they cause. There has been no trial in PMR but since it is the same disease but at a different point on the spectrum I imagine that it may also have various underlying causes - and tcz won't work for them all.
However - you should find a very low dose of pred manages the PMR symptoms. And to be honest, I wouldn't put all the blame for the wobbles on the pred - GCA and PMR both affect balance, GCA can involve the ears and that affects balance. PMR doesn't do muscles much good - and my balance with "just" PMR, both untreated for 5 years and then with a moderate dose of pred (never above 15mg), was quite bad. It has improved over the 11 years on pred.
The skin effects ARE most likely the pred - you were on a very high dose for a time, but age also has a great deal to do with delicate skin and the pred probably speeded up effects that would have happened soon anyway. My skin has changed a lot in the last year, 10 years of pred had had little effect until now but there are changes starting. And you are older than I am.
Your response is welcome and was not aware of these two symptoms being responsible for the "wobbles". If you don't mind, would like to share your comments with my doctors. When I was hit with PMR one year ago, didn't notice any of that: was only suffering with stiffness in legs. Was on 5mg Pred for a few months only before being hit with GCA half a year later. Should likely never have come off the Pred for the PMR at that time. Too late now! Thank you for sharing and enlightening. Appreciating everyone's experiences.
Hi. I was on Tocilizumab injections as well. It helped me off steroids completely and I am also injection free so far. My story is in my profile. Good luck with the injections, I hope they work for you as they did me.
That's encouraging and thank you; everyone's situation can relate and I do appreciate. Will look at your profile (haven't learned how to do that yet! :-))
Just touch the picture next to the name. It is at the top after that.
Good luck with all
AHA~ thank you. One more question: what is "shielding"? Isn't it amazing that both PMR and GCA affect the female population more than the male? What did we do wrong! haha
Are you in the uk? If yes then shielding is like isolation due to Covid 19. Not allowed out or any direct contact with anyone who is not shielding in the same property. Hope this is what you were looking for😷
Okay. Makes sense. On the onset of COVID, my med team arranged for the blood work to be taken at my home, rather than going out in public. Rheumy insisted that I stay housebound for the duration, until our Phase 2 set in a few weeks ago. So guess I was "shielded"! Thanks for that. Honestly, have only been out about 4x since March and all in the last few weeks. I can now go to the Lab for the blood work, monthly. So relieved/happy that our medical plan covers these visits. However, do pay a portion for prescriptions but no complaints
Stay safe
Oops just read you are in Canada. I am in Scotland 😀
I have no experience of GCA or TCZ but just a comment on the swollen ankles and feet - I get that at lower doses of Pred so it's just possible that rather than being a side effect of the TCZ it might be a result of reducing the Pred? I hope the TCZ works for you, for many people it seems a wonder drug.
Well, thanks for that info. Will keep fingers crossed that the swelling goes down, especially since my GP said all was okay with blood work. Strange that the swelling is also in my fingers etc but can live with it......well, have to! Neat that you shared that but had no pbm with the Pred alone: that's why was thinking it was TCZ as only started a month ago. But appreciate all ideas. Thank goodness for this site.
Yes, thanks. Had already left message for Rheumy (she is on holidays until next week); but did take 5mg last night. Your ideas are invaluable
Hi. I have been very “lucky”. Yes I just stopped after having weekly injections for 12 months, this was the recommended length in Scotland. No side effects but it does take up to 3 months to completely come out of your system. So had to shield while that was going on. I have a telephone consultation tomorrow with my rheumatologist. Not sure what questions will be asked.
Hope you get back to normal soon as I have, so far. Don’t rush the last part Of treatment though.
.
No, have not stopped injections: still weekly and in to my 7th month (4xper month). My rheumy did research before she did a work-up in order to see if I qualified for TCZ. She feels that I will be on for another year at least and quite pleased with the results thus far. Very fortunate that my neuro opthamologist arranged a "team" including the Rheumy and my GP. As I said, TCZ is relatively new here in Canada but rheumy did extensive research before she prescribed it. It is not cheap, but appears to be worth it. With COVID, all our doctors doing telephone or internet consulting which is consoling.
How do you feel it ruined your body - in what ways. I too have been trying to reduce my pred because I felt it was not good to take. I am at 4mg. I am curious about your case.
I live in USA and I had doctor give me 1 mg tabs so that I could reduce etc. In four months I went from 20 at very beginning to 15, 10, 9, 8, 7 6, 5 and now 4. I want to be off of this med.
Hope you are doing ok
Are you being treated for GCA or PMR? In December I was at 100mg Pred for a week, then to 60mg for a couple of months. Rheumy started me on Methotrexate injections at the same time, while she researched TCZ. Once she was satisfied with the findings, she prescribed TCZ injections while still doing the Pred. No more Metho, just TCZ and Pred, all the time gradually reducing the Pred. Hateful drug but apparently the ONLY drug that deals with the inflammation, so we suffer on. Don't think your dosage will affect you as I was affected. After about 3mos of the Pred, one morning woke up and was wobbly on my feet: no sense of balance. But the worst was how my skin thinned out and only discovered that when the toilet lid slammed onto my forearm and tore the skin off. Bleeding everywhere. Then when I bandaged it, found that taking the bandage off (adhesive) was just as bad, as it also tore and bruised. Perhaps I'm just clumsy as then had dropped things on my legs, more gashes and bleeding. Limbs are full of purple/brown welts from all this. Think it's improving now that am off the Pred pretty much.
I started at 100; then 60 as mentioned above. Gradually in increments, got to .25 three wks ago. However, this week, was feeling the PMR pain in shoulders, so will resume 5mg for a few days until I speak with Rheumy n ext week. Good luck to you.
Hmmm. Face Masks are mandatory here, when in close proximity to people, but not if you are outdoors. The people that we call "COVIDIOTS", think masking is a conspiracy, and these people are usually in the areas where there is high numbers of COVID. Mind you, we have conspiracy theorists in Canada too, but in general, most are abiding by the protocol. These are scary times and must all do our best.
I too am in Canada. I was diagnosed in May 2017 and put on 100mg pred for 3 days. Then to 80 for a month and tapered down from there. I was fortunate that the prednisone did save the sight in my right eye. I was offered methotrexate and actemra and refused both. I did get the thinning, easily bruised skin, the fat face and the thinning hair. I have now been off of Prednisone for 4 months. I have not a bruise on me, as noted by my son the other day, my face is back to normal (if not more wrinkled lol) and my hair is back to it’s mop of thick hair. So have patience with the side effects as these too will pass. I wish you luck on your journey.
Oh wow and good on you. You had your diagnosis early enough and now hopefully, no more to be seen. Hadn't realized that it would take so long to be on the Pred but guess have learned a lot from all the Posts here. You gave me reason to hope now. Looking fwd to having my hair back (although my hairdresser isn't). HaHa Thank you for responding
Wise advice!
I was very fortunate that my optometrist was on the ball and sent me immediately to an opthamologist, right from the appointment. I was down to 1 mg pred after 2 years, but then discovered I had PMR as well so up to 20mgs. Was fortunate it only took one more year to get off but I did find lower doses had less side effects than the higher doses. Just the deathly fatigue at each taper.
Actemra sure does seem to be helpful. Little confusing though that do many doctors so pleased with Actemra results based on decreased inflammatory markers, i.e. crp & esr. Refer to patient info sheet 12.1 or 12.2 (can't remember which) crp & esr usually go to normal but no longer indicative of inflammation or not. I was told this also from Genentech medical consultant. Doctors apparently don't know this?
Some don't - so get all excited. I work on the assumption that if there are certain things that aren't said then questions must be asked - they won't have read the documentation themselves!
Where do you find the info sheet?
I sent a reply. Hope you it jarn. I'm so bad on anything internet. 😏
You did fine........yes did get it. Many thanks.
Hi Jarn,
My Rhuemy told me that Actemra/Tocilizumab is an addition to Prednisone not a replacement and to slowly taper from the Prednisone. I have been on Actemra for four years and I still take 1.5mg of Prednisone as per my Doctors orders (two Rheumys). I hope this helps.
I had mispoke as was also told that it was in addition to Pred My fault. but thanks for adding. I should change my comment
Well, didn't know that you could take TCZ for such a long time but will keep that in mind. Both my GP and Rheumy are pleased with the results thus far.
I tried Actemra, and failed on it. Constant pain and fatigue. I am also a cancer survivor and those with cancer or who have had cancer should not take Tociluzimab. I am wondering why you say Pred ruined your body. Pred is insidious, and slowly does damage, but that damage can be slowed down and limited. It is a dance we do with GCA, A life spent battling a rock and a hard place. The baby or the bath water. You get my drift. There are no easy answers with this illness.
That being said, part of what has ruined your body may also be the illness itself. Having a SED rate in the 80s or 90s is more inflammation than the body can handle. I look at prednisone like this. I appreciate both what it can do, and what it can cause. It is this dance I do, every day of my life.
Wondering your opinion phebamom. I had basal cell skin cancer on forehead in Jan 2020. Removed by mohs surgery. Have had gca since early 2019. Rheumy & dermatologist felt benefit outweighs risk so I started actemra a month after the mohs. Just had dermatologist check. No cancer (yet). Would you stay on actemra under this circumstance. GCA, osteoporosis & recent dx pmr & other health issues have really kicked my rear. Actemra has worked to reduce prednisone but had to increase couple weeks ago due to flare inspite of actemra. Very bizarre complicated disease.
You might find this interesting and comforting:
ncbi.nlm.nih.gov/pmc/articl....
which says "Data to date suggest no change in cancer risk with tocilizumab although event rates have been low.28 Postmarketing data suggest a slightly lower rate overall (incidence rate ratio 0.79)"
Well, when my body became "wobbly", needed support to walk, skin started peeling off when I bumped, tremor in hand, fatigue.........that's when I feared the Pred. Yes, it is a saviour to eradicating the inflammation, but nobody warned me of these side effects. A year earlier, had PMR and after 3months on Pred at 5mg, had no such side effects. But when GCA made the scene, was started at 100mg for a week; then 60mg for 2mos; and gradually tapered down. Anyway, had to accept it and Rheumy researched TCZ before prescribing it to me and she did say that eventually, I could ease off the Pred with the help of TCZ. Hoping that this will be the case as I continue with TCZ. Interesting to hear that it doesn't work with cancer patients. Good Luck to you in your quest for healing.
Patient info sheet can be found online jarn. Go to actemra patient information. It is section 12.1 or 12.2. Genentech is the pharmaceutical company. Think it's a subsidiary of Roche. I also called Genentech & asked abt actemra effects on inflammatory markers. The medical consultant was very helpful in discussing my concerns & answering questions. (I don't expect them to be totally objective but she seemed to speak freely & honestly.) Not positive but think you can get info at: 1-800-actemra or 1-888-835-2555. I live in Wisconsin USA so not sure if those numbers work for you. Good luck to you in this gca/pmr journey.
You are extremely kind and am so bad, would never have thought of that! I let my rheumy do all the research. But I will definitely follow up on that. Sincere thanks, Spanky! (one of my sons enjoyed the nickname "spanky" many years ago)
That sounds great Dadcue. It's so strange how each person reacts so differently to medications. Stay safe and well!
Guess that's why our bodies are so different & we all react differently. Hoping we all get those good results too.
You bet that's exciting and hallelujah! Wishing we all have such an outcome. Keep it going.
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