June 20. Chronic headaches, diagnosis migraines, 2 days later loss of sight, GCA diagnosis, steroids starting IV dose then 60mg tapering , now at 8 together with Tocilizumab from late Sept ongoing. Problem is massive weight gain, hair loss, breathlessness. Trying to get GP appointment almost impossible, have not been seen by GP since June 20. Rheumatologist offered appointment, mostly by phone but now have a face to face in 3 weeks. Worried about breathlessness for next 3 weeks. Would love to get 2nd opinion from specialist in GCA. Have found all this very hard to deal with, sight loss bad enough without associated problems.now have aching upper arms/shoulders. Anyone got any advice? I am new here, haven’t posted here/anywhere else before.
Feeling low: June 20. Chronic headaches, diagnosis... - PMRGCAuk
Feeling low
Sometimes the use of Pred can cause Breathlessness, this needs to be checked out asap.
If you cannot get an appointment or a sensible answer from your GP then call 111.
Do not wait 3 weeks, that is the road to exacerbating your problems and GCA is never to be messed with and when if you do get your GPs surgery to answer, do not take 'no' from the receptionist, if necessary ask to speak to the Practice Manager and complain.
Most GPs surgeries also have an email address and one with some sharp words may help.
You say you would love to see a specialist in GCA, was your current Rheumatologist the person who diagnosed your GCA and admitted you to hospital?
Can you please fill in your profile with a bit more detail, as we cannot always remember your personal details, i.e Date diagnosed, dose started on. You can click on my avatar, or anyone's avatar and read their profile which would give you some idea of what to put.
I would be calling 111 today.
,
Same song sheet🌸
Hello, thanks for reply. GCA diagnosed by Opthalmology dept who then got me urgently treated in AMU. Rheumatologist came in to oversee treatment once I was already on steroids and it was rheumatologist who got me onto Tocilizumab.
Hi, And welcome,
I had GCA for best part of 6 years...long time waiting for diagnosis...and then only after I’d lost sight in right eye (permanently).... but that another story. In remission over 4 years
Firstly - if you have shoulder/ arm problems would say you have gone below the level of Pred you need....even with TCZ added in, reducing to 8mg in 8-9 months is very quick.
You need to contact Rheumy department to discuss upping steroids - another 3 weeks is too long to leave it- it will only get worse. Personally I would ring nhs 111 today for advice - explaining situation, or worst case scenario, attend A&E.
This is a link about GCA and PMR - a general overview of what to expect - seems a bit daunting, but please have a read through -
healthunlocked.com/pmrgcauk...
This is my take on mono-sightedness - might also help - healthunlocked.com/pmrgcauk....
Hi, I found the mono sightedness article quite reassuring, as i have awful trouble with steps and have poured water everywhere except in the mug too many times to count, not to mention reaching for something and missing it time after time! It is only funny the first few times. Thankyou for your help and support, it is appreciated.
Yep! You’re very welcome - it’s the little things that get frustrating - even after nearly 9 years I still find steps (outside particularly) are a bit of a nightmare. My son’s house has 20 stairs, in two flights (13&7 with a 90 degree angle) - dark carpet on them as well - so I have to count myself down! Take care. 🌸
Hi I experienced breathlessness which one consultant put down to weight gain and general swelling,she said that it’s highly likely that if you are noticeably a different shape on the outside then it likely that all your internal organs are being squeezed with internal oedema. I haven’t had the problem to anything like as severe since losing weight and generally being able to move around more easily. Definitely better on lower pred dose but as others have said your reduction seems rather fast.Hopefully with more support from members here you will get better, but certainly don’t leave it for 3 weeks for answers 🙂
"reducing to 8mg in 8-9 months is very quick"It is about in the middle of the two arms of the clinical trial, reducing with a fixed taper over 6 months and 12 months.
It might be.. But in my opinion it’s still quick.....okay if it works.....
Me too - but medics also appear to be unaware tcz only works for half of patients to get them off pred altogether!!! Return of symptoms at 8-10mg pred should ring bells - but some of them ignore it or blame the patient ...
Probably blame the patient!...but as you say it doesn’t work for all, but some docs seem to think it MUST.
Which tells me they didn't read the documention - so how much do they really know about the risks? GCA ain't RA ...
Read the documentation ! 🤣😂🤣
I know ...
I am sorry to hear that you are going through this Forestlady. No wonder you are feeling so low. Can you make contact with your Rheumatology Dept. to try to bring this appointment forward? When I was first diagnosed with GCA/LVV my Rheumatologist and my GP contacted me each week. I hadn’t suffered the eyesight consequences that you sadly have. Like you, I really needed support. I experienced the breathlessness that was quite alarming- even fastening my shoes. I think it was a side effect of Tocilizumab. I also think that Tocilizumab contributes to easy weight gain and the only solution is to cut the carbs and sugar drastically. My hair seems to have responded to Kevin Murphy products and looks much better now. Experiment with volumising products and supplements.I am able to send an email message to my GP surgery with specific concerns. They do ring back. Have you no facility like this at your surgery?
It sounds like you do need more Prednisalone than 8 mgs, in spite of the Tocilizumab. I would be inclined to try 10 mgs. I have struggled to get below 10 mgs even though I have weekly Tocilizumab injections.
A warm welcome to the site! I have found it to be of enormous help over the weeks, months and years. Stay with us. I have found more knowledge on here than may GPs seem to have.
Hi and welcome!
Usually I would simply say cut your carbs - it works for pred-associated weight gain but unfortunately weight gain is also a problem due to tocilizumab and I don't know if it also works there. However - a low carb diet DOES work for weight loss - so you could be our first to try it for tcz too!
However - for two reasons you need to be seen asap by someone about the breathlessness, Being on tcz puts you at greater risk of developing infections, that includes chest infections and pneumonia, they must be treated as soon as possible and usually the tcz would be stopped while you are recovering.
The other reason is that pulmonary fibrosis is an adverse effect of tcz - you must be checked for that but you should get an x-ray for a possible infection anyway.
This is the versusarthritis page for tcz:
versusarthritis.org/about-a...
If it were me I would call 111 today and ask to speak to a doctor - it works best evenings and weekends because otherwise they might tell you to go to the GP and as you know - that isn't easy.
Just to add to what DL said, only half of patients are able to get off pred altogether even with tcz, for the other half there are other underlying causes of the inflammation besides the one that tcz deals with and they may still require some pred. 8-10mg seems to be the borderline.
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