I started on my journey of horror 8 months ago with GCA and a script for 60 mg Prednisone, which I dutifully took for 10 weeks and then started a gradual reduction in dosage. I am now down to 6mg but the GCA is still active as indicated on a Doppler Ultrasound a few days ago.
I have been a part of this site since the beginning of my illness and I don't know what or where I would have been without the amazing help and knowledge of all those who contribute.
As many of you can attest to, the side effects of Prednisone can be horrific. Having GCA was life changing for me. I was a vivacious 69 year old Landscape gardener, Tap dancer and netball player, with long thick hair and a size 12 body. 8 months later I am now nothing more than a vegetable, I cannot work, dance or play netball as I have lost almost all of my muscles, suffered huge weight loss, living with a mind that is crazy/psychotic at times and constantly brimming with brain fog. I have the shakes, my skin is thinner than tissue paper, I have gone from low cholesterol to extremely high, my bones, which a dexa scan last year showed were normal are now almost in Osteoporosis, I have a moon face, and Insomnia 24/7.....and because of taking Actemra I have also had to become a hermit, seeing few people and also transferring all these horrible 'side effects' onto my wonderful husband of 52 years. He too also has to live with not only my pain but also the isolation.
The latest side effect to emerge has been the icing on the cake for me - I am now almost bald and the small amount of hair left has the texture and appearance of candy floss.
I must also mention my utter disappointment with virtually every medical professional I have met since diagnosis because they are so ill equipped to deal with GCA and most of them are happy to tell you so. From the GCA sites I am now a part of this is a universal phenomena, resulting in most of us being filled with both disappointment and fear. Mostly our Rheumatologists are having to experiment with their patients to see what drugs/methods work for who.
Along with all of the above very debilitating factors of GCA it has become obvious that family and friends don't have a clue about what their loved ones are suffering every minute of every day, but I don't believe that it is their fault. I believe that it is our fault for not insisting on a change of approach to GCA and Prednisone use. This has bothered me every since diagnosis, when you tell a friend what you have they just say something totally inappropriate because they have no idea what GCA is, or how serious it is. However, if I were to say I have GCA and the treatment is long term Chemotherapy they would immediately understand the implications.
Since going 75% bald my family and friends have been visibly shocked when they see me and ask 'why is this happening to you, I thought it was just an immune condition' ? And my answer is "it is the chemotherapy that has done this to my body"..... and they understand immediately.
Sympathy is the last thing I am looking for but I am looking for understanding and acknowledgement that I have a very damaging and serious rare disease and that is why I have become something of a hermit and cannot join in as I used to.
The dictionary definition of Chemotherapy is "treatment of diseases, especially cancer with the use of chemical agents or drugs".
High dose Prednisone is Chemotherapy and it is what every GCA patient is given.
If we who have this disease want more recognition and hopefully more research to help others in the future I believe we have to stop submitting ourselves to the 'unknown' and start a full blown awareness campaign. When next you see your doctor refer to the treatment you are having as "Chemo", and when you speak to your family or friends again refer to your treatment as "Chemo".
I hope everyone understands where I am going with this. It is just the start of putting GCA at the fore front and not allowing it to be hidden away because it is too difficult.
Thanks for reading.
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Whilst I fully ascribe to most of your post - I would dispute that even high dose corticosteroids are chemotherapy, although they can sometimes treat a cancer they are mainly adjuvant.
Chemotherapy: 1. In the original sense, a chemical that binds to and specifically kills microbes or tumor cells. The term chemotherapy was coined in this regard by Paul Ehrlich (1854-1915).
2. In oncology, drug therapy for cancer. Also called "chemo" for short.
Steroids are used alongside chemotherapy drugs - but mostly for a different purpose.
Thanks for reading my post. As I see it.... Chemotherapy is used for many different disorders including cancers, blood disorders and a multitude of autoimmune diseases. If you research the history of Chemotherapy it seems it was first used in 1909 to treat Syphillis , and has been used for many different diseases other than cancer. The word literally means "treatment of diseases by chemicals" from the scientific prefix chemo- "chemical" and the Greek therapeia, "healing". And if Prednisone and Actemra are not made from chemicals then so be it. But I somehow think they are.Cancer treatment has hijacked the word Chemotherapy, so everyone now thinks it is only there for cancer, and that is not the case.
But, after saying all that the reason for my post was to highlight how sad our situation is, and that we only make it sadder by not trying to elevate it to the place it needs to be. Just because there only a few people with GCA doesn't make it any less devastating than cancer and I believe it can be even more devastating than some cancers. I for one will not to accept 'my fate' and do little if anything about it. I like to think that I am more like Glen McGrath the Australian cricket player whose dedication to breast cancer awareness raised millions of $ and gave rise to the biggest cancer foundation in Australia, all because he couldn't bear to watch his wife suffer with the cancer that took her life.
I firmly believe that calling my chemical treatment Chemotherapy is just a small step in the direction of recognition and maybe some action, especially if all GCA sufferers did the same.
There are many chemotherapy drugs used to treat vasculitis. But Prednisolone/steroids isn't a form of chemotherapy.
Chemotherapy is treatment that is cytotoxic / cell killing. It's a very specific type of drug. Chemotherapy drugs used for vasculitis include Cyclophosphamide (the strongest type usually given), Azathioprine and Methotrexate.
It can be difficult to communicate effectively with relatives. But it is still important to be precise.
Are you on any other treatment for GCA other than steroids? I'm concerned if you're on such a high dose of steroids but haven't been put on a steroid sparing drug and/or chemotherapy.
I'd recommend that you give the Vasculitis UK charity helpline a call to chat about this. Here are their contact details:
The usual steroid sparing drugs aren't shown to be of much use in GCA - Prof Dasgupta has said quite clearly that methotrexate has no role to play. The poster is on Actemra - the ultimate steroid sparer in GCA, the one biologic that works and is approved. And chemotherapy (cyclo) is almost never used in GCA - I assume because of a poor success rate.
I would suggest they contact the PMRGCAuk helpline and visit out forum - it is our speciality after all!
My neighbour has GCA. She was put on 80mg pred. She still went blind in one eye. She didn’t even know it was a type of Vasculitis. Even now has been dismissed from her consultant rheumatologist because, no doubt, she is now 90yrs.
I completely understand you and what you are trying to get across to much of society that doesn’t have a clue. Sell your story to your friends/family as you wish. It’s all very well and good all of us knowing the finer detail of these drugs but most people do not. And they really aren’t focused on the detail.
I have EGPA and got off steroids after 20 years on/off. I now take a biological, but I’m never going back to them. I became useless and a shadow of my former self and the impact on those around me. Now I do Zumba and Boogie Bounce and my mind is sharper and my weight is much better. My neck hump will never go. But being menopausal now I simply refuse to ever take oral steroids again. If you refuse they will have to offer you an alternative.
"I now take a biological". I would be interested to know more please. How did you research what alternatives there are to pred & what was best for you & not result in a flare...? Thank you. 🙂
Thank you for your post. Sadly I can relate as newly diagnosed this and still very young this had been devistating for me as I am single. You have helped me immensely and Would like to reach out via Facebook if possible as I am now very isolated in my vasculitis journey
In answer to your question I was on 60mg Pred for 10weeks , then Actemra was added and I have now reduced to 6mg. So all in all I am going in the right direction for now.
I agree about being precise and, If you look into the history of Chemotherapy, it seems it was first used in 1909 to treat Syphillis, and has been used for many different diseases other than cancer. The word literally means "treatment of diseases by chemicals" from the scientific prefix chemo - 'chemical' and the Greek therapeia - 'healing'. And I believe both Prednisone and Actemra are made from chemicals.
Cancer treatment hijacked the word Chemotherapy back in the 60's and now everyone seems to think it is only there for cancer, and that is definitely not the case.
I feel so much better informing my loved ones and friends about taking chemotherapy for my illness. At least now they really understand why some days I am not the best and why I am so thin and almost bald and why I eat an anti inflammatory diet and have ditched alcohol etc etc. I need to be understood for what I am going through and if using the correct word for my medications is not what you would use then that is fine. I was hoping that others would understand the need to bring GCA into the foreground and not try and hide it away. It seems I was wrong.
Ibuprofen and paracetamol are also made from chemicals - do you class them as chemotherapy? The literal meaning of the word and the medical meaning of the word have subtle differences.
Yes, they are chemotherapy - ie chemical healing. Just because the Cancer Pharmaceutical Industry started to use the word in the 50's for its newly developed cancer medications really does not mean that the word chemotherapy is exclusively theirs. Whatever the chemical composition within a cancer drug is, remains exclusive to a cancer treatment, but that should not preclude different chemical compositions within other drugs ie Prednisone from also having the name Chemotherapy.
Re the medical meaning of chemotherapy I believe it has just become the 'nom de guerre' for cancer. And quite frankly cancer is not the only terrible disease inflicted on humans, but because of the huge numbers it has become an epidemic. And as you yourself said the term Chemotherapy was coined decades before cancer coined it as there go-to phrase, by Paul Ehrlich when he discovered a treatment for syphilis. So as far as I can see the word is universal and is not owned by any particular drug or organisation.
"I must also mention my utter disappointment with virtually every medical professional I have met since diagnosis because they are so ill equipped to deal with GCA and most of them are happy to tell you so"
They are ill-equipped to deal with GCA but I suspect it isn't for the reasons you seem to think. The options are high dose steroids - which do work reliably to prevent blindness when started in a timely manner - and then the addition of Actemra which you have to reduce the dose of steroids significantly, entirely in half of patients and greatly in the rest. Only having a choice of 2 drugs, one of which is limited to one year's use in the UK, doesn't compare well with other conditions cared for in rheumatology - but other drugs don't work on the mechanism of GCA, no point subjecting patients to the potential adverse effects of something that is known not to work.
Yes...I agree with what you say. However, that doesn't make it any easier for those who are suffering quite terribly with this disease, like myself and thousands of others. Hence my quest for a "little bit of recognition" as to what we are having to go through constantly and most likely forever. The response I have had from those friends and family when asked how are you going ? and my reply is "this chemo is really hard to cope with" has been quite monumental compared to just a few weeks ago when asked how are you going? and I would say I feel quite awful and not in a good place today....or words to that effect, and they just brush over it and say something like, "I'm sure you will feel better in a few weeks". It just doesn't register with people ! But the word chemo sure does register. And I reiterate, Chemotherapy isn't only used for cancer.
I suggest you come and join the specialist forum for PMR and GCA - where we ALL understand your problems because we all have the same ones. And work tirelessly to communicate information to patients, family and friends and even doctors. You will find most of our patients really are interested and informed about the finer details of their management which is quite specific to the illnesses. Vasculitis in general is a different thing and in some cases far worse. Once managed well - and it can be - GCA is not really life threatening or even life-limiting. Life changing maybe. Many other vasculitides are - and rarely go into remission as GCA does for the vast majority of patients.
I fully understand where you're coming from, regarding the comments and questions from friends etc., like "Are you better now? " after suffering the symptoms of one of my vasculitis caused diseases. It's not easy to explain that I'll never be better! But they mean well. Although in remission from the disease itself, it has damaged my lungs and kidneys, and messed with my heart rhythm, amongst other things. These things are a constant burden, with absolutely no end in sight. Perhaps telling folk you are on Steroids, will have impact, as they are recognised by many as a strong and undesirable medication to be on. I have been on Preds for seven years, albeit a low dose for the last few years, because my body can't cope without them.
My experience with telling people I am on steroids has been the opposite to yours. In Australia doctors prescribe very low dose steroids for just about everything from Asthma to insect bites so the majority of people here consider steroids to be quite harmless and even benign meds. High dose steroids are something else, although they may save your eyesight and life they can also be deadly in other ways. For me its Chemotherapy from now on in the hope that it brings our disease some prominence instead of obscurity.
I do see where you are coming from but in my experience and opinion it is better to educate than potentially mislead by miscommunication?
The word chemotherapy is a term which has been adopted by society to represent cancer killing cells, or cancer treatment, in general. I believe it would be unfair to expect the general public to have advanced knowledge of the hundreds of different types of medications that are produced by drug companies. "Chemo" has become a recognised term very much linked with cancer.
I am on steroids, an immune modulating medication and a chemotherapy based immune suppressant in order to manage my various AI diseases. I educate my peers and explain that although I do not have cancer I am on an chemotherapy bas drug. I found myself doing this more since the pandemic started as the phase "Chemo" carried more clout with people and they look my clinically extremely vulnerable status far more seriously. So I definitely understand where you are coming from.
However, I wonder how any acquaintances of yours would feel if by some misunderstanding, they thought you had mislead them by saying "chemo" and they thought you had cancer, only to discover that that wasn't the case? That is not to say that AI disease isn't dreadful to levels that you can only understand when experiencing it yourself. If I put your theory to the test I am on daily "chemo" for the rest of my life. Yet someone with cancer may be having cycles of chemo which eventually come to an end.
As a medical professional I couldn't call regular, non-cytotixic medication "chemo." I can't think of any friends or colleagues that would. But I do see your point of view by highlights that some of these diseases are treated with cytotoxic medications.
Interesting discussion. I hope your situation improves with improved management.
Oh. I didn't know that. It's always seemed a big deal to me here. Oh well, try impressing the seriousness of the disease, but I suppose you've done that already. Good luck.
In my opinion and experience, as happytulip says, that is entirely the wrong way to go about raising the profile of an illness. There is no point demonising the only option that is available in the short term to manage a potentially life-threatening and life-changing disorder and which does allow a far better quality of life for most of us.
On your argument - no-one would drive a car or use public transport. Like happytupip, as someone who has been involved at the forefront of medical communication for many years - I would not use the word chemo for paracetamol. That is misrepresentation and poor communication and does no-one any favours.
I totally relate to your main points, the rarity of vasculitis adds to our burden. Such a sadness. I have had bowel cancer since vasculitis, and it has been incredibly easy to bear/cope with compared with vasculitis. When I say to people, give me bowel cancer any day they’re quite shocked, but that is the truth. The lack of knowledge, lack of acknowledgement, lack of interest from medical profession about vasculitis, is quite simply cruel on top of the illness itself. As to the conversation about the word chemo, I don’t know about whether it can technically be used to describe prednisolone, but it is a great summary word, which people understand relates to very serious illness, and I’d agree, use any way we can to increase acknowledgment of our situation.
Hi Chipper, I think we are on the same wavelength. I am slowly improving though as we know a flare can happen at any time and then its back to square one ! Re the word Chemotherapy it is a universal word 'invented' by Paul Ehrlich a chemist in the early 1900's, decades before it became the go-to word for cancer treatment. It literally means Chemo - Chemical and the Greek for Therapeia meaning healing. Anything that brings this disease a little bit of recognition is a good thing as far as I am concerned. Nearly everyone who posts on the 3 GCA sites that I am part of seems to treat their illness and prognosis as merely inevitable and accept without question the horrible side effects. With those attitudes nothing will ever be done to elevate GCA to an illness which requires more research and funding. Yes Prednisone is very necessary, but how good would it be to have a similar drug without the horrific side effects?
You really make me think, on an individual basis. In many ways over the years I have accepted my illness and horrid treatments as ‘inevitable’. Not to excuse this, what may appear to be a bit passive, but I think it comes from a mixture of utter relief at still being alive after the dreadful years up to diagnosis, the joy that there was some/any treatment available to bring me back from the brink, and over the longer term the lack of energy to take on the medical services when just getting through a day was/is challenging enough.On a group basis, though, Vasculitis UK is an excellent active organisation and a great place for all of us to put what energy we can into raising the profile, research and funding.
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