Happy New Year everyone. My daily task is to read the latest posts, and I learn so much from them, this forum is invaluable to me. And I thank you all for that.
You may recall I have no faith in my rheumatologist, who thinks because my bloods are normal, that I shouldn't have symptoms return after reducing my dosage, and so I took the advice of you all and remained on 40mg for two weeks before reducing and I am now into my second week of 35mg.
It turns out that I have been approved for Tocilizumab. That was quick. I was only diagnosed on 6th Oct! I feel everything is running away with me and I can't catch up.
I am nervous reading today the effects of the injection, particularly as I have a history of DVT, and wonder if I need to remind them of this. I am bruising very easily with the pred, and not sure if this will get worse or remain the same.
Also, coincidentally after reading today's posts, my achillies have been painful with my walking laboured. Fine if I have shoes on though. Also I have rib pain, mainly under left ribs which feels like it is catching. I have, due to my terrible osteoporosis, broken several ribs, very easily. It is not that kind of pain. But gets in the way, if that makes sense. The eyes being blurry are bothersome but have got used to that, plus the days when I get black spots, but not every day. So many things to understand. Dry lips, scraggy skin!!! Urgh...
And today, suddenly, which I have not had this whole 3 months, I feel distended and bloated. Just wondering if this is all due to taking pred for 3 months now and this is what happens. That's fine if it is, it is just new for me. I am on a low carb, no sugar, no processed food diet and thought I was doing quite well, but maybe not.
Also, I am concerned re the Tocilizumab, but it seems if I tell others they think I am so lucky to have been approved. I am expecting to hear in the next couple of weeks about starting it. Looking at the side effects, they seem similar to Pred plus a few others to add to the mix which is daunting
This illness is a full time job, I feel I am constantly waiting for something to change, when I really should be just going with it. I totally agree re pacing yourself. Twice I have overdone it with a dog walk and paid the price the next day. But you definitely have to remind yourself each day. The thumping heart will often stop me in my tracks by the afternoon and I am good for nothing by then just waiting to go to bed.
I would be interested to hear anyone's thoughts re the sudden changes I am experiencing. 3 months of pred, or from lowering the dose? Or something else?
I don't seem to be able to write short posts do I. Apologies for that. And thank you all in advance. Phenomenal forum that I am grateful I found so early.
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Sophiestree
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I started with PMR in 2011. On Pred for 6 yrs. Then developed, like you, GCA of the large vessel type. My only head symptom was hoarseness. On high dose Pred for just over a year when I started weekly TCZ (Tocilizumab). It took 3 months or so to kick in, but made all the difference. I was able to taper Pred (tho took a year to fully come off). I have had no side effected except somewhat elevated cholesterol and an occasional injection site irritation. I’ve gone to every other week injections and feel well. Back exercising and good energy levels. Have kept on with low carb and good sleep habits which has also helped.
The literature of side effects is day daunting, but so is for Pred, yet we seem to manage okay.
Hi, thanks for the reply. I am interested, as this is not the first time I have read this, that you choose to change the injection from once a week to once a fortnight. Is that something you decide yourself? Or do you run it by the rheumatologist. Good to know you have done well on it though and that I need to be patient if it took 3 months. I am in such a muddle with everything, I don't know what to think. During those 3 months did you have some symptoms? I have had a few return after my reduction, but absolutely nothing like they were originally, it's just that I now know what they are, and so am more aware of everything.
I was on weekly for two years and doing well so Rheumie suggested to taper to biweekly. Still doing well, though slight niggles if I try to stretch it further. Next decision will be to go to monthly or come off completely. With Actemra one can just stop it. It is harder to gauge results as it automatically takes CRP to near zero. Have to go completely on symptoms.
Hi Sophiestree, don’t worry about the length of your posts, you are very symptomatic at the moment and understandably worried.The self administered Tocilizumab injections are subcutaneous, not directly into a vein, check, but I don’t think that is a worry for DVT. I have had no bleeding or bruising with the injections at all. I alternate legs but can’t tell by looking. It is understandable that you have been given approval for Tocilizumab. The fact that you have significant osteoporosis will have given you priority. It is worth trying this drug in my view. It is the only drug apart from Pred that has shown positive results in combatting our diseases. It has also been used for advanced COVID, I understand, with good results.
I do recognise all the symptoms in your fifth paragraph from my own experience, apart from broken ribs. I associated them all with Pred. Make sure you have regular eye checks from a well equipped Optician at least. The only side effects I have experienced that I associate with Tocilizumab (5 months) are persistent Blepharitis that I have to be very meticulous about eye hygiene with, an infection in one nostril that I need to keep on top of and a worsening of blocked nose, sinus type symptoms that began with Pred. My fatigue has continued so far. Apart from this, there is less of a sensation that I am taking a powerful drug, than the early days of Pred. My Rheumatologist is a leader in the field of our diseases, she has great faith in Tocilizumab and I have great faith in her.
You are right to be actively managing your disease. This is definitely the way forward. It does become like second nature though - not fire fighting, like it feels now.
I am happy to DM with you about Tocilizumab anytime. I know that it feels like unchartered territory.
Remember, you do have a serious systemic disease, if you feel like cuddling up in bed in the afternoons , do so. Let us know how you get on. X PS I need to prompt my GP for the regular blood tests - every six weeks or so, to make sure that my liver etc. Is ok.
Ah thank you for that re the length of my posts. I envy these people who write one-liners!!I understand re the DVT aspect, I will put that one aside then! That's a relief.
Funnily I am having an eye test tomorrow as my sight has changed rather a lot these past few months. I will go through everything with them tomorrow, but I have told them about my condition.
I have had blepharitis for quite a few years, and, to quote the optician, rather bad dry eye, so am constantly administering drops during the day and gel at night, plus have eye wipes. Let's hope I can keep on top of that.
Not looking forward to the sinus issues, as I also have those with abundance! Sinus infections are a regular for me! Hence pain in my face can be confusing.
How is your sleep? I do not get great sleep at the moment and so when I feel so shaky and heart thumpy I am unsure if it's lack of sleep, the condition, or the drugs. Or everything!
Fatigue is definitely a big factor, alongside the stabbing in my head.
Yes, I understand re bloods, I will ask the rheumatologist when I go for the lesson on how to administer the drug how often they plan on checking my blood results as my liver has been affected by the LVV and I have had quite a few Hepatology appointments, fibroscans and liver biopsy. I think things have improved now from what I gather.
Thank you re the private message. I will likely take you up on that when I start if that's OK.
I can't believe how all-consuming my health is, when I have never been one to indulge in how I am feeling, partly due to working (although I haven't worked since July now) stupidly long hours and pretty much always feeling exhausted or in pain. I have had a big rethink though and am planning on cutting back massively...
Cutting back massively is the biggest favour you can do for yourself.You ask about sleep. Well I am now an intermittent insomniac and I have decided to embrace it. There can be something magical about being awake when everyone is asleep. When I worked it would fill me with cold terror, my jobs have often been stressful. Just me and my house that I love, books, radio, this iPad, talking to my Australian family. My older grandchildren send emails, films and pictures. I have conversations with people on the forum, other insomniacs or Canadians, and Americans. Heron sent me to bed the other night, all the way from Canada. I can sleep in, in the morning for the first time since my teens. I have had x3 shielding letters, so not much to get up for ie early. Physical exercise and medical appointments.
I think I have become prone to low level infections that never clear up. I get the odd stabbing pain in my head but my GCA didn’t present like that. GPs have no time to get excited by blocked noses, weeping eyes etc I hope they go when we get off immunosuppressive medicines. I keep throwing large doses of vit C at it.
Yes, I am enjoying not working after 45 years, having never spent this long not working! But also seem to feel guilty when I don't get up until 9.30 in the morning, or find I have achieved very little. I need to work on that.I have not received any letter, but assume as I am new to this, I am not on a system.
Vitamin C, good tip, yet another supplement to add to my large list! Ha ha
Thank you for the reply. Hope your infections are not too intrusive to your daily living.
Hi it does all get too much at times,especially in the early days. I find it hard to have a clear picture of what side effects came when, but I do think that the bloating came about 3 months in. I struggled through the high doses of steroids then they added methotrexate all to no avail of improving things. After 6 months I got tocilizumab and for me it’s been life changing. I have now been on it for 14 months having had an extension due to the pandemic. What I would add is that the symptoms I have experienced of widespread vasculitis change frequently,at one point I could hardly get about and my left arm was heavy and wooden . Dental problems were another issue, I could go on but like you feel this is long enough!😊
That's really good to read. Thank you. Yes, let's not start on the teeth! Having had a zalendronic infusion, I can't have anything done and I badly need attention! I feel like I am falling apart. It's great to read all these positive stories though. I am suddenly feeling a bit lifted and encouraged.
I think it’s from the vasculitis, as the inflammation has been better controlled mine have improved considerably, I feel that if it was the tocilizumab it would have got worse and as the lady I was replying to said , she has dental problems and hasn’t yet started tocilizumab
Thank you so much for this. It sounds like you have found a good solution.I am definitely going for it, just apprehensive, but I have never liked taking any medication to be honest. My thyroid medication is bad enough, and of course that likely contributed to my deteriorating bones.
Interesting re your embolism. I was told they saw something on my scan, and funnily enough I have just returned from having a CT Lung Scan today... so I guess that can't be a bad thing. I have a parathyroid scan next week... my life of scans!
Hopefully I can come back and report positive news in a few weeks time, depending on when this might start.
There seems to be an increased incidence of DVT in patients with RA and with Covid who are treated with tocilizumab but I don't know if that also applies for PMR and GCA. But I think I would have a very low threshold of suspicion.
Yes, I am realising that now.... it was the reference this morning to the bleeding. I got a bit worried, but I think that maybe a separate thing and not to be concerned about.
That is interesting. I am guessing having only been taking pred for 3 months that I am not there just yet! She says, crossing her fingers, after her lung scan!
Hi.I was on 40 mg of Prednisolone on October 2018 for 3 months before starting Tocilizumab / Actemra weekly injections. I have now been off Prednisolone for 15 months and the injections for 10 months, seems longer. My journey is in my profile. I do understand everyone isn’t as lucky as me....so far. It doesn’t take all the strange feelings away but it did get me off Prednisolone very quickly. It does take quite a while after completing the injections to feel normal but I did get there. Hope you work out what is best for you. Take care.
Dear Sophiestree, I’ve read your recent posts with great interest and sympathy, you seem to be having a hell of a lot thrown at you. Sending you all best of wishes for good outcomes. X
Ah, thank you... that's really kind. I am a tad overwhelmed right now. But am preoccupied today with my heel pain and subsequent back pain, which is something I have not had for some time, so that has been disappointing. I return those best wishes to you too.
Hi DadCue. When I saw rheumatologist last August he thought I didn’t have PMR but I had been on pred for three years for it and when I tried to get off previously I had classic symptoms. He referred me for the FDG-PET just in case there was something going on and I’m glad he did. Yes it is used as a diagnostic tool and showed up my large vessel GCA. You have an injection of a small dose of radioactive material in glucose which is taken up in the body at sites of inflammation. The radiation is minimal but obviously the scan is not repeated frequently. The actual scan was fine from neck to mid shin I think. It was like being passed through a large Polo mint! 😄
Hi, apologies for the delay, computer issues which have finally been resolved.I wasn't a typical case, which is why it took several months to diagnose LVV. My ESR and CRP crept up daily and my Calcium was extremely high along with Liver bloods etc.
I had and am still having several scans, 12 to date, Ultrasound, CT, MRI, Biopsy and next week a Parathyroid Nuclear scan. My organs showed lesions, adenomas, liver, colon, tonsils, and parathyroid, and embolism on lungs, but understand, that this could all have been from the LVV. The PET scan was organised, I think by then, as they thought perhaps I had cancer somewhere but couldn't pinpoint it. I left the hospital after the scan at 11.00 am and by 2.00pm was rung with a diagnosis. My symptoms, particularly my head, were not classic as I could touch, brush and wash my hair, and jaw was fine, it was more severe stabbing pains in my head, sore throat, high fevers every day and night sweats regularly, and my neck, which I had been complaining of for 7 months or more to my sister, thinking it was my glands. My father had non-hodgkins and so I was wondering if it was that as it went under my clavicle to my armpit. Plus loads of other symptoms across my whole body down to my legs. I did not have any kind of biopsy for LVV though. My biopsy was for my liver which has lesions, but think it was fine from what I can gather.
I think the PET scan is the scan of all scans from what I can gather, if other scans have not given any specific answers.
I have a full on medical family, except me, so you pick stuff up, and learn to ask for every report there is or hospital notes, as otherwise you are likely to get someone who hasn't read them all and missed something vital.I intend to watch the video, but need a spare 45 minutes. Will be interesting, thank you.
I was diagnosed with GCA (temporal and aorta) last August directly from a PET scan. The previous week i had spent on daily intravenous antibiotics, and every other scan you can think of - last scan was the PET, at which point I was diagnosed and hospitalised for another week on mega Pred. So agree with everyone, it seems to find what the others don’t, necessarily.
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