I just wanted to say hi and tell you a brief bit about myself. Just over 3 years ago I had an accident at home at broke my ankle in 3 places and also badly disclocated it, up until this point I had always been relatively healthy and my only stay in hospital prior to this was when I had my daughter. Having never broken a bone before I didn’t know quite what to expect especially as it involved surgery to repair. What I didn’t expect was to be in constant pain of one sort or the other when my ankle had healed and I was eventually told that I had CRPS, a chronic pain condition. I have since them spent a lot of time with different pain management teams but there is no cure. About February/March last year I started feeling really unwell without a lot of pain, headaches etc etc. I initially just thought I was run down and like we all do just waited for it to pass. I did try talking to a doctor about it, round about June last year and to say she was dismissive is a bit of an understatement. I eventually got to talk to a doctor who took me seriously and starting exploring what could be wrong with me. In August, when my symptoms were getting worse, she decided to send me for a blood test to rule out a condition that she thought hopefully it wasn’t but just wanted to make sure. Well within 5 hours of me having the blood test she rang me to say that she was making me an emergency appointment with the hospital but said if I started getting blurred vision I had to go straight to the hospital, well when I told her this had already happened a couple of times in the days before I was sent straight to the hospital where the first thing they did was give me 60mg of prednisone. Luckily for me my local hospital is Southend, as I found out they have an amazing Rheumatology department and I now have Professor Bhaskar Dasgupta taking care of me now. I have GCA and Polymyalgia Rheumatica. I originally was started on 60mg of Prednisone, which was gradually lowered, then I was given Leflunomide as well and 3 weeks ago I started on Tocilizumab weekly inje cations. I have to say the side effects of all these medications aren’t fun, and that is before you take into account the meds I take for my CRPS, but something I’ve learnt over the last 3 years is you never know what’s lurking out there and all you can do is deal with each thing as it happens and try to keep on smiling. I’m really looking forward to being part of this group and it is so nice to know there are people out there who know what you are going through 😊
Hi.: I just wanted to say hi and tell you a brief... - PMRGCAuk
Hi.
Wow! What a story. Thank goodness you ended up with Prof. Dasgupta. Welcome to the forum this is your second bit of good fortune. So much support and experience and kindness. Look forward to getting to know you better. I am on Tocilizumab too, there are a few of us.
Thank you so much and yes and I agree, I just wish I had joined earlier. How long have you been on Tocilizumab and have you had any weird side effects? my strangest one is that everything now tastes of soap 🤢
I have a pesky eye infection and nasal infection that is proving difficult to get rid of (3 months) I have been on Tocilizumab for 5 months. It enabled me to get down from 40 mgs of Pred ( my second course after developing GCA/LVV) really quickly with no flares. I stuck at 10 mgs Pred. I am pleased about that because I had developed steroid induced diabetes ( now normal) high blood pressure and cataracts, fortunately no bone density issues. I don’t have a soap taste, but strongly flavoured foods can taste odd - cheese, spices. Did you know that they are treating advanced COVID 19 patients with Tocilizumab ? Are you completely off Prednisalone? That’s what my Rheumatologist wanted.
I think I might have read somewhere that they are using Tocilizumab for some COVID patients but hadn’t really thought about it until you’ve mentioned it, I’ll have to have a look. I am down to 10mg of Pred and 10/20mg, 10 one day 20 the next, of Leflunomide. I really sympathise with you about the eye and nasal infection, do they think it is linked to your condition or medication?
The GP doesn’t say, she just prescribes creams and lotions. Conjunctivitis is in the side effects of Tocilizumab, if I remember correctly. I have been prescribed Fusidic Acid 1% which has dramatically improved my eye. My nose has been bleeding since a COVID swab 3 months ago - bizarre! My guess is the suppression of my immune function has left me open to infections.
Welcome Helipad
Oh my goodness what a journey & then to GCA/PMR but you are been treated by the Prof so you will get pioneering treatment.
Jane has already made contact & she is on TCZ - you will find a list of abbreviations over on the right in the ‘Pinned Posts’ until you get into the swing of all the jargon.
Once again Welcome 🌺
MrsN
Longtime PMR’er
Thank you. My doctor now calls me the mystery patient as I do seem to be getting some very weird and not very well known conditions, but hey anyone can get the common ones 🤣. Thank you for the tip on abbreviations which will be so much easier than having to remember how these things are spelt.
Welcome: as Jane says , this forum is literally a godsend . I’m lucky to be with the Prof as well. I’m only on Pred. So Just to say hello and good luck .
Hi,By sheer coincidence I spent time in Southend Hospital back in 1971 for a broken and dislocated ankle - very painful!!
Over time this has healed so that I have been able to exercise etc, but I do get quite uncomfortable arthritis there. When first diagnosed with PMR, that arthritis stopped hurting, thanks to the prednisolone, but has gradually resurfaced as I have tapered down.
That story is not relevant to your condition, and I do sympathise with you. You'll get lots of good advice and help from this Forum, and, clearly, you have a very good rheumatologist.
Good luck
Paddy
PS: we left Rayleigh, where we used to live many years ago, and are now in the Midlands.
Thank you, it is always nice to hear other people’s stories and lovely that you reached out to me .
Welcome to the forum Helipad. You will find it a great source of knowledge and advice . 😀👍👍
Hi, and welcome,
Won't add to what others have said, but you might like to look at this - healthunlocked.com/pmrgcauk...
Just to let you know you will get through GCA - I had it for just under 6 years, but have been in remission since September 2016.
Thank you for reaching out and I will definitely have a look at your link. It’s good to hear you are in remission
You’re welcome - I just wanted you to know there is light at the end of the tunnel, sometimes you think there isn’t, especially when you read some posts on here.
That’s not to say I don’t have other issues... 3 joint replacements due to osteoarthritis- but it’s all relative isn’t it?
As my late hubby used to say - “You learn to live with the cards you’re dealt “
That is so true, when people say things like ‘you don’t act ill’ a comment I find very strange, my response is that I can either wallow in it or make the most of the hand you’ve been dealt.
Very true!
Hello, I developed PMR 5 years ago and GCA-LVV (large vessel vasculitis) about 18 months ago. I've been on Tocilizumab for 10 months and now down to 5mg pred. The only side-effect that I'm aware of is that my neutrophils (one of our white blood cells) have been low, but this is monitored regularly and responded to missing a couple of TCZ injections.
Wishing you well.
Thank you, my problem is I think that I am now on so many different medications now, last time I counted it was 14 🤦🏽♀️, it is hard to keep track of which side effect is from which medication 🤣
Hi and welcome! It would be great if you could put your story on your profile for easy future reference. Thank goodness you finally met a sensible doctor.
All done. I know Dr Monk is such a godsend and I don’t know what could have happened if I didn’t have her to talk to.
Welcome and so glad you got the right diagnoses. I also have PMG and severe ankle problems after a bad accident so sympathise.
Hi Helipad
I’m trying to reply to you re Southend Rheumie nurses helpline but the site isn’t behaving itself and doesn’t bring you up when I try to reply via you’re original message.
Anyway I found your profile. You do have a lot going on - at least you have the best Rheumie!
Re the nurses helpline (you were asking me) it was unfortunately disbanded around two years ago and all the calls now go through Prof D’s secretary. Poor girl, as good as she is she can only field the calls as isn’t qualified to answer them. Presume you have her number if not hospital switchboard do. I removed it from my phone only recently.
I was under Prof D for 6 years before moving back to Yorkshire after 32 years in Southend. I was very worried about leaving the excellent healthcare in Southend but my fears were unfounded. I have another excellent Rheumie in Leeds and GP practice where I live - all good.
So welcome to this informative forum with lots of advice from all manner of experiences. Take the bits that might work for you and ask as many questions as you want to. Best wishes. T.
Thanks for that Telian. Yes I do seem to go for the more unknown conditions 🤣. I certainly do feel for Professors secretary if she has to deal with everyone’s calls and queries, now I know why it’s so hard to get hold of her. I’m glad to hear that your new doctor is good, as I have found out through all the different things I have experienced in the last 3 years you are totally reliant on the knowledge or lack there of! With medical staff.
I did always manage to to get through to the secretary - there were certain times when she answered the phone plus she didn’t work full time. When you do get through ask her her hours of work he best times to call. She didn’t answer between 12 & 2 back then.
Some GP surgeries make it hard work for patients. Don’t let receptionists bully you. They’re so good here and show great respect at all times.
Thank you, I will bear that in mind. I’m quite lucky in the respect that my GP surgery is pretty good, the receptionists have been very helpful and the Dr. I prefer to talk to is amazing and she is the one that recognised that my symptoms could possibly be GCA and arranged for me to have a blood test straight away, whereas the previous dr I’d tried to talk too just totally dismissed me and looking at my notes she made afterwards didn’t listen to a word I said, needless to say I no longer let them make me an appointment with her.
Too right to refuse seeing the unhelpful Doctors. What a blessing you found one that listened to you re the GCA.
Yes definitely, she is a brilliant doctor and my go to person 😊
My one in Southend saved my sight for sure. Still send him a Christmas card since we moved.
Mine saved mine as well, my vision had already started going blurry in one eye and it was only the fact that she rang me a few hours after having my blood test to tell me that she was making me an urgent appointment at the Southend hospital and happened to mention that if I had any problems with my eyes before then I would need to go straight to hospital, she then asked if I had experienced and problems and we’ll with an hour of me telling her that yes I had I was at the hospital being handed 60mg of Pred.
It’s so scary. I lost the sight in one eye and can only say it was a miracle because the sight gradually returned after being fast tracked to Southend and put on Prednisolone. The headache from hell rescinded and within 6 hours I felt normal. Think we’ve both been lucky.
Wow you was really lucky, such a close call does bring it all home how reliant we are on finding a good doctor and we are both able to tell that story.
My neighbour down there wasn’t so lucky. He showed signs of PMR in the August. When he said how he’d been ie couldn’t get out of bed and racked with pain plus weight loss, I suggested he see his doctor. He lived on his own and was very independent - he said he went but you can’t interfere too much. I did say to him, I don’t want to scaremonger but if it is PMR and goes untreated you could lose your sight. That’s exactly what happened. He lost sight in both eyes. An opportunity missed Professor Dasgupta said as he didn’t get him soon enough.
My neighbour admitted to me later that he didn’t understand anything about the illness. He knew I had both but because I ‘looked’ so well I wasn’t seen as anything but.
Oh no that’s terrible. People do tend to judge how ill you could possibly me by how you look and as someone who is now living with 3 hidden disabilities/illnesses I now know otherwise and have had a fair number of people actually say to me that ‘I don’t look ill/in pain.
We talked about that some time ago and people suggested their various responses - sometimes said a loud but not always. A favourite was "It isn't my face that's ill" and "YOU don't look stupid" came well up the list ...
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