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chemical synovectomy

lucywlucyw Posts: 3
Hi,

I have been seeing a rheumatologist on and off for about 10 years now. (I am now 27) When I was younger (about 3 or 4) I had Juvenile Arthritis in my wrists and ankles. I grew out of that within a couple of years, and when I was 15 I twisted my knee and the following day it had swelled up. Since then I have had problems everytime I did a long walk or similar, that my knee would swell up again. As my sister has RA they told me thats what it was, although my rheumatoid factor has always come back non-existent on every blood test I have had. I had an arthroscopy about 8 years ago to rule out it being anything else, and was told it was definitley RA.
I have had continual uveitis for the last 8 years or so (I did have it when I had the juvenile arthritis, and had my tear ducts removed when I was about 1) of which was treated with methotrextate. I did not want to go onto the methotrexate when it was suggested by the rheumatologist as it seemed a very strong drug for an annoying swollen and sometimes painful knee. However to save my eye sight was a different matter and I agreed. I came off this about 3-4 years ago as I was admitted to hospital with breathing difficulties after an episode of glandular fever. It was never diagnosed as being either a result of the methotrexate or pneumonia. However I am now not keen on going back onto a DMARD as I remember how serious the breathing problems were (hospitalised for 10 days on oxygen 24 hours and close to not making it through one night). My eyes settled down and the opthamologist is happy to control it with eye drops.
My knee is still swelling randomly now, not a huge amount however after an MRI there is appaerntly a lot of swelling inside my knee. It causes me some problems, but not like others on here. However I struggle to bend it completely, such as sit on my heels.
Since April I had 2 steriod injections which do not seem to do much. I spoke to the rheumatologist at my last appointment for the injection and he wants me to start on Sulfasalazine, however after my recent problems I am reluctant to go onto this (and also as it is only 1 joint, I'm not sure I want to put chemicals into my whole body for years at a time).
I spoke to a different rheumatologist at the appointment before the injection and she mentioned this chemical synovectomy. I cannot see much information about it anywhere and was wondering whether it was a commonly suggested option?
I am confused as one rheumatologist is saying she can inject radiation into my knee, kill off the synovial fluid and then no need for drugs all around my body to solve 1 joint problem. Whilst the other is suggesting yet more drugs. I am going to be 28 this year and my partner and I would like to have children in a few years time and after being on methotrexate, I am reluctant to take a load more drugs (I know pregnancy can occur on Sulfasalazine but I don’t think I would want to be taking drugs at that time).
I am just after a bit of advice really as feeling a bit confused by 2 very different opinions.
Thanks,
Lucy

Comments

  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    Hello, I am a forum member and I have had two of these done (my left knee was injected twice with radioactive material). I can't say that they achieved much for me but that could just be my hard luck: at the time it was just the left knee that was affected - oh to return to those halcyon days of just one affected joint. :wink: I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicketstickywicket Posts: 25,888
    edited 30. Nov -1, 00:00
    Hello Lucy. I’m not a member of the Helpline team, just an ordinary forum member but, as you’ll see in the small print on the main forums page, the Helplines are monitored Mon-Fri but not, usually, at weekends.

    As someone who has had RA for over 50 years, I can see your dilemma though personally I’d take the meds every time. I did have breathing problems with one – not methotrexate and not as serious as yours – but my view is that the disease, unchecked, can also be pretty nasty.

    I haven’t heard of chemical synovectomy. Why not put a post up on Living With Arthritis forum and ask there. I know a few have had synovectomies but I don’t know which type.

    I hope you can eventually reach a decision that you’re comfortable with.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • helpline_teamhelpline_team Posts: 1,842
    edited 30. Nov -1, 00:00
    lucyw wrote:
    Hi,

    I have been seeing a rheumatologist on and off for about 10 years now. (I am now 27) When I was younger (about 3 or 4) I had Juvenile Arthritis in my wrists and ankles. I grew out of that within a couple of years, and when I was 15 I twisted my knee and the following day it had swelled up. Since then I have had problems everytime I did a long walk or similar, that my knee would swell up again. As my sister has RA they told me thats what it was, although my rheumatoid factor has always come back non-existent on every blood test I have had. I had an arthroscopy about 8 years ago to rule out it being anything else, and was told it was definitley RA.
    I have had continual uveitis for the last 8 years or so (I did have it when I had the juvenile arthritis, and had my tear ducts removed when I was about 1) of which was treated with methotrextate. I did not want to go onto the methotrexate when it was suggested by the rheumatologist as it seemed a very strong drug for an annoying swollen and sometimes painful knee. However to save my eye sight was a different matter and I agreed. I came off this about 3-4 years ago as I was admitted to hospital with breathing difficulties after an episode of glandular fever. It was never diagnosed as being either a result of the methotrexate or pneumonia. However I am now not keen on going back onto a DMARD as I remember how serious the breathing problems were (hospitalised for 10 days on oxygen 24 hours and close to not making it through one night). My eyes settled down and the opthamologist is happy to control it with eye drops.
    My knee is still swelling randomly now, not a huge amount however after an MRI there is appaerntly a lot of swelling inside my knee. It causes me some problems, but not like others on here. However I struggle to bend it completely, such as sit on my heels.
    Since April I had 2 steriod injections which do not seem to do much. I spoke to the rheumatologist at my last appointment for the injection and he wants me to start on Sulfasalazine, however after my recent problems I am reluctant to go onto this (and also as it is only 1 joint, I'm not sure I want to put chemicals into my whole body for years at a time).
    I spoke to a different rheumatologist at the appointment before the injection and she mentioned this chemical synovectomy. I cannot see much information about it anywhere and was wondering whether it was a commonly suggested option?
    I am confused as one rheumatologist is saying she can inject radiation into my knee, kill off the synovial fluid and then no need for drugs all around my body to solve 1 joint problem. Whilst the other is suggesting yet more drugs. I am going to be 28 this year and my partner and I would like to have children in a few years time and after being on methotrexate, I am reluctant to take a load more drugs (I know pregnancy can occur on Sulfasalazine but I don’t think I would want to be taking drugs at that time).
    I am just after a bit of advice really as feeling a bit confused by 2 very different opinions.
    Thanks,
    Lucy


    Dear Lucy

    Thank you for your posting. It’s important that you speak to your rheumatology department about your concerns as it sounds as if you have had different advice from the same rheumatology department. You could speak to the rheumatology nurses to explore your treatment options. It is not surprising that you are confused. It does not necessarily mean that you would have the same side effects with different medication. You can also talk to them about your concerns regarding having children in the future. We do not have any information on synovectomies and it would be down to the individual rheumatologist to decide who would be suitable for specific treatments and to talk to them about the benefits of this treatment.

    There is information on pregnancy and arthritis on the link http://www.arthritisresearchuk.org/arthritis-information/arthritis-and-daily-life/pregnancy-and-arthritis.aspx that you may find helpful to look at. There is also more information on pregnancy and Rheumatoid Arthritis on the National Rheumatoid Arthritis Society (NRAS) website that may be helpful to you. You can access this on the link http://www.nras.org.uk/about_rheumatoid_arthritis/living_with_rheumatoid_arthritis/relationships_pregnancy/rheumatoid_arthritis_pregnancy.aspx

    I would also like to encourage you to contact us here on the helpline if you feel that it would be helpful to talk things through with our helpline team. I hope that this is helpful to you.

    Best Wishes
    Dawn
  • lucywlucyw Posts: 3
    edited 30. Nov -1, 00:00
    Thanks everyone, looks like I just need to do some more talking to the doctors to see what the options are in more depth. Lucy
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