I have moved country a year ago and am now under a different rheumatologist obviously. He has changed my unconfirmed diagnosis of inflammable arthritis to (in his opinion quite firm diagnosis) of chondrocalcinosis or pseudo gout with some osteoarthritis. So I am probably not in the right forum now.
Where I am quite grateful that I have a diagnosis now and one that feels less severe than RA (although I am not yet clued up on pseudo gout as only had the diagnosis the day before yesterday), I am also sad that I am not a part of this community anymore. Even though I was more of a silent guest, reading but not posting much, I felt a deep affection for this group and the warm and lovely people that make it up. I might continue reading about how you are all getting on I need to find something that fits for my illness and hope I find something similar.
So I say farewell and all the best to you guys and wish you all the best in your journeys!
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Eisbaerin
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Lets get one thing straight darling there is no need for you to leave the group just because your diagnosis has changed. Since you find the group helpful and if so stay. I have more than one complaint and i am not leaving darling and there is no need for you. Gout is a form of arthritis anyway so you see darling there is no need to leave.xxxx
Thank you sylvi and Nettienet! This is why I love this group so much, such lovely people! As I said, I will still be looking in and reading to see how your stories go. Just thought with my new diagnosis there wouldn't be a case for me to post my own stuff as it doesn'r really relate. But maybe I still will... Thank you for being so welcoming always!
I fully agree we don't know are selves half the time nobody gets proper diagnosis inflammatory desease and it's trial and error with drugs and there not always for Ra
I to have multiple conditions including chondrocalcinosis, OA and inflammitory Arthritis, recently called Rheumatoid arthritis by my consultant ! But find this forum so helpful.
would you be able to tell me a bit more about the chondrocalcinosis? I was basically told by the doctor that there isn't much they can do apart from giving me steroids in a flare and that I should work with ibuprofen in the meantime. No other treatment options given and I feel a bit lost now...
Eisbaerin, I too was given no information about chondrocalcinosis, not even that it could be managed by steroids. I was too unwell at the time to ask, which was actively discouraged by the rheumatologist anyway ! Some internet sites say that chondrocalcinosis is not as painful as what we regard as 'gout' , but opinions are changing with better diagnostic techniques and it is regarded as being one of the most painful bony conditions along with gout. In gout uric acid is laid down at the joints, but in chondrocalcinosis it is calcium. Many people have symptom free calcium deposits in joints, what makes it inflame is not known, but probably it is stimulated by other problems, such as hyperparathyroidism, OA, RA.
I take 150 mgs voltarol (diclofenic acid) per day and really struggle without it. I've taken voltarol for 27 years with no ill effects for a variety of musculoskeletal problems . Almost all medical people I have come into contact with have tried to reduce the dose or change me to another NSAID without success. I believe there is something in the way voltarol acts that is different to many other NSAIDS, particulary the way it acts on prostaglandin production, which also plays a role in inflamation, that I find beneficial. I also inject MTX weekly and take 4 mgs prednisone daily( I have RA too) which has helped my feet a lot. Some days I have no control of movements in my right toes and the pain can be excrutiating, almost nerve like pain. I find if take voltarol 50 mgs x 3 daily, everyday, and on very bad days use some voltarol gel on the toe joints it helps. Be careful if you use voltarol gel along with NSAIDs as it is still absorbed into your body and can make you exceed the maximum dose. I use the gel under GP advice.
My feet, particularly along the metatarsal joints, get so hot at times, I use ice packs to cool them down. But I also have raynaulds so I need to take care that I don't spark off an attack !
Also really important is well fitting shoes/boots to support the toe joints (I'm assuming your feet are affected). Finding shoes can be an expensive nightmare. Clarks trigenic soles work well for me, but they have changed their boots this year and I find them too narrow. I've bought a new pair from hotter , but haven't worn them yet. Walking boots can also be useful. I've seen several podiatrists who have given me a variety of insoles and supports but I don't find them particulary useful, but I do use metatarsal supports in my walking boots. I can't walk far due to the chondrocalcinosis, it is more prohibitive than the RA at the moment and seems to be worse over the colder months, giving me a bit or a reprieve in the summer months. The arches of my feet are beginning to collapse, I find my feet less painful since this has happened.
I've been told to mobilise more for the RA, but everytime I do, and I mean everytime, the chondrochondrinosis become's a major problem and I end up not being able to walk at all. So it is about finding the balance, between the RA need to mobilise and the chondrochondrinosis flare ups.
My consultant initially told me I did not have RA ...in the strongest terms....and wrote about this extensively in her update letter to the GP. She was quite unkind when I asked at the next appointment, again if I could have RA. I complained to the nurse on leaving and the consultant called me and apologised, I was on sulphasalazine at the time. My health deteriorated rapidly thereafter and I developed an allergy to the salicylic acid in sulphasalazine. On an emergency rheumatology appointment she commented that I probably now did have RA and it was time for MTX. She has never mentioned her cheeky letter or the telling off she gave me for asking about the possibility of RA. Her attitude did mellow somewhat but she is retired and I now have another much younger consultant with a completely different approach to treatment who I am still trying to get used to.
I guess what I am saying, don't be fobbed off and keep asking about your diagnosis and what evidence it is being based on. Chondrocalcinosis can 'mimic' RA, or RA might be an underlying issue. The rheumatology nurse may also be able to help you even though you do not have a diagnosis of RA.
Thank you so much for your most helpful reply! I find it very hard not to get fobbed off at the best of times, but at the doctors it is extra hard. I will try to get a second opinion though maybe and see if I can get any more info out of them that way and maybe even some sort of therapyoptions!
There is absolutely no need to leave Eisbaerin.....after all you may be able to educate us on pseudo gout , & I'm sure quite a few of us in here have osteo arthritis as well!
Where did you move from to? It's always very interesting to compare treatments in different countries.
I moved from the South East of UK (near Brighton) to Germany, near Frankfurt.
So far I have not much to say about pseudo gout yet and still trying to find ways to deal with this as not much coming from the doctor by way of treatment option. But of course I will be more than happy to share any info I will gather with anyone interested!
Thank you and yes, I do miss the sea, as well as some other bits of the UK, not to speak of my friends. But Germany is treating me very well all in all and I am happy.
Bad Soden is not that far from me at all, maybe half an hour or so? I am glad you had a good experience there!
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