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Rank: Advanced Member
Groups: Registered
Joined: 5/18/2010
Posts: 34
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Hi! I am a new member. I was one of those strange negative rheumatoid factor people, who was only positively diagnosed after a twin knee operation to tidy up stray bits of lining and bone fragments about 14 months ago. I had symptoms which were treated with NSAID's and steroid injections before that diagnosis for about 15 years. Once the diagnosis was made I was put on Methotrexate and gradually over 6 months I increased this to 25 mgs. I had very good results from being only able to walk a few feet and that in pain to being pain free last Summer. Sadly, my Mum died after a horrible 3 months of treatment for lymphoma in early December and together with other difficulties with one of my daughters, the pain, the swelling and the hobbling came back. When I saw my specialist she xrayed the difficult joints and has since told me that more serious destruction has taken place on the insides of my knees. She has also precribed ciclosporin (50mgs increasing to 150 mgs ) I think this is to be taken with the Methotrexate. She is concerned that the inflammation is not under control. Has anybody out there had experience with Ciclosporin, because I read the side effects and they made me feel dizzy!? I know they always have to put this stuff in to cover themselves and RA is a serious disease, but I would love to hear from you guys.
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 872
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Hi Katharine,
Sorry to read your sad experiences and loss of your Mum, Big hugs.
Sorry too that youhave RA but glad you managed to find us and hope you find the forum as helpful as I do,
My RA started when my Mum died in 1997 and I am sero negative also, xx
Re queries: I would definitely discuss meds queries more with the professionals especially re Mtx and how the increase as things are not always made clear and its important to be certain, you could call specialist secreatary to make sure,
I'm sure you will get lots of advice via the forum too as it's full of information - I think someone will be much more helpful with this query than I can be, but definitely go back and ask more info,
& Hope meds soon help, take care and keep posting
Love from Liz xx
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Rank: Advanced Member  Groups: Registered
Joined: 1/7/2010 Posts: 441 Location: Bristol
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Hi Katharine,
Welcome to the forum!
I don't have any experience with that drug but just wanted to welcome you.
Looking forward to getting to know you.
Joanna
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Katharine,
Welcome to the forum but sorry you have RA.
Also sorry to hear of your Mum's death. Life must be very hard for you at the moment.
I can't help with the cyclosporine, I've never been on that but know what you mean about the list of side effects!
Looking forward to getting to know you.
Love, Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Katherine,
Wecomel to the forum. Sorry you have RA but welcome to the clan.
With regard to your drug I am sorry but I have had not taken that drug so sorry cannot help.
Sorry to hear of your Mothers death , I lost me mother 7 years ago and it gets easier, but
at first I never thought I would.
I am from Somerset and aged 56 I hold a full time job although at present on long
term sick (9 weeks) due to RA flare and run down and high b p . I was no mtx until last
Nov and and they trying to get me on lelfllumide but my bp has played up. Fingers
cross should get started v soon.
You will get lots of advise on this site and I know someone out there will help you.
Rose
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hello Katharine, and a very warm welcome to the forum, though I`m sorry you have RA. Sorry too on the loss of your mother. I was diagnosed over 4 years ago, and about 12 months down the line I was put on cyclosporin. I wasn`t on it for very long, as it sent my BP rocketing, so I was taken off it. I know the side effects of all these drugs can be scary, and I know that what suits one person doesn`t always suit another.If you are at all worried, then definitely mention it to your rheumy nurse. Take care, Kathleen x
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 854
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Hello Katherine and welcome to the forum. I am so sorry that you have had to endure the deathof your Mum and the deterioration of your health. I have no experience of cyclosporin but the Rheumie nurse is the best person to discuss this with.
Look forward to chatting with you. x
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Katherine Welcome to the forum! Sorry to learn of the death of your mum and family problems. Stress often plays a big part in our RA problems causing flares and deterioration. I hope things settle down for you very soon. I have had Cyclosporin (to be honest there isn't much I haven't had!) but wasn't on it for long; it wasn't particularly effective for me and caused numerous side effects. It is quite a toxic drug and because of this I think it is only given for short periods of time although it is known to be successful when taken in combination with Methotrexate. It's important to have BP and kidney function checked regularly and avoid grapefruit (seriously!!)! I'm Lyn, married to Mike, have four kids in various stages of education and live in Lancashire. I too have sero negative RA and was diagnosed 22 years ago (after birth of daughter!). I have run the gamut of medication and various surgical procedures and am currently on Enbrel, Methotrexate, Prednisolone, Naproxen and a bucket load of other bits. But heyho, as long as things keep ticking over. I'm currently being investigated for knee damage, the joys, and had an MRI scan on Monday. I've previously, like you, had a synovectomy to remove the lining and all the loose bits from inside the knee joint. On the waiting list now for more modifications of one sort or another ... unless of course I stick with the crutches which right now seems very tempting!! I think I would be inclined to check that you should be taking the drugs in combination. It's possible, but worth clarifying if you are uncertain as it is a toxic combination. Look forward to getting to know you, Lyn x
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Rank: Advanced Member
Groups: Registered
Joined: 5/18/2010
Posts: 34
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Thank you everyone for your messages, which made me feel much better. As it has been said before, it is easier to discuss this horrible condition with those who have experienced it and are in the middle of the battle . What a warm hearted online community you all are! I look forward to chatting to you all in the future.
I will take on board all your advice and comments and will certainly check out how and why I am taking the Ciclosporin. I didn't have a chance to discuss it with my specialist. She actually precribed Sulfazaline. However, when I got back I googled it and discovered it had an aspirin root to it. Aagh! I am very allergic to aspirin and had potentially lethal encounter in my early days with this condition with another Dr. The new meds were prescribed via a letter to my GP and that was unclear on the subject about whether it was with or without the Methotrexate, so I shall check it out.
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Rank: Advanced Member  Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Katherine,
So sorry to hear about your mum that is so sad,and also troubles with your daughter cant be easy for you. I'm sending you a big hug to hopefully make you feel a little better. I'm Lorna I was diagnosed almost 3 years ago, I was very ill at that time but with the help of amazing doctors and the triple therapy I am so much better now. Still on MTX and Hydrox and Folic Acid as well as Ferrous Sulphate for anemia not RA related though. Try to be strong and positive it does help. Thinking about you. Lorna xx
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Rank: Advanced Member
Groups: Registered
Joined: 5/18/2010
Posts: 34
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A quick thank you to Lyn for sharing her experiences with Ciclosporine. I look forward to hearing how you get on with your knees. It may sound strange , but I often fantasise about remission,replacement knees and wrists and a prescription for the new wonder drugs. There is no quick fix though is there?
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Rank: Advanced Member Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Kathrine, Keep fantasizing and be positive, I am in remission now so it does happen. I do ache if I do too much but I try to stay within my limits and I am fine. I base everything on the pain I was in in the beginning and nothing touches it. So I ignore any little aches. I love my garden so that keeps me busy and I work part time in schools with children who need more support. Be strong and sending good vibes  Lorna x
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Rank: Advanced Member
Groups: Registered
Joined: 5/18/2010
Posts: 34
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Hi Lorna
Good to hear that remission can happen. Am sure you are right about positive thinking. I was a very optimistic person and still am when well but the RA does take the warmth and clarity out of life a bit when it is bad. I try to aim for neutral thoughts then. Changing drugs does make me overthink my condition, which is why it is good to be able to discuss it with people here.
I definitely want to know more about this prescription before I start it.
In addition, and everyone will think this a trivial matter(which it is), the Ciclosporin makes the skin very sun sensitive to the point it can cause skin cancer if you go out in the sun without sun block and covered up from head to toe. We have booked a holiday in Crete in June, which was literally a ray of sunshine to look forward to in a bit of a bleakish 12 months. The thought of having to skulk in the shadows is very frustrating and ,according to the side effects, I will be growing a beard too!!**** It is not that I like to grill myself under the sun, but I like to do some gentle sightseeing and swimming during daylight hours.
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Rank: Advanced Member Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Katherine, Good news about the holiday, can you not arrange to start the treatment when you are back from your holiday. When I was in Furteventura last oct I used 50 sun cream from Boots as I am fair skinned. I also had a sun hat which I wore when out in the sun, I hope you have a good time. I did have a healthy glow when I came home. I no its not easy especially when you are in pain, my Rhumy said I would forget in time but I don't think I ever will. The shower helped lots when I was really stiff, I had it everywhere even in my jaws. But I always tried to remain positive there were worse people than me out there. Gentle massage helps too. I no I sound a bit like Pollyanna but its how I got by.
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Rank: Advanced Member Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Continue with your holiday - th at will do you as much good as take tablets.
Just put on a high factor cream, sit by pool and enjoy. I am off to France next Wednesday and
I was told by my GP and the Spec nurse to say go as it is a good recuperation process
(does make me feel guilty though as I am signed off work)
Rose x
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Rank: Advanced Member  Groups: Registered
Joined: 12/8/2009 Posts: 230 Location: Leicester
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Hi Katharine... Welcome to the forum! I'm Helly, 35yrs old and have had juvenile rheumatoid arthritis since I was 2... In regards to remission, definitely keep dreaming because it can happen. I went into remission when I was 12 thanks to methotrexate and steroids... This lasted a long time until last September when my arthritis unfortunately became active again. I'm now on etodolac and hydroxychloroquine and so far so good albeit it being dolly steps... In regards to your holiday, I say go and enjoy yourself but just take extra care in the sun... high factor sun lotion and plenty of fluids.. The heat will certainly do your joints some good :) Helly x Celebrating 10yrs of National Rheumatoid Arthritis Society Doing a Tandem Skydive - May 2011 - All Sponsorship Welcome - www.justgiving.com/helencopeland Read my blog - Helly Copeland
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Hi Katharine, and welcome from me too. Sorry to hear about the loss of your mum, its very hard I know. I hope you do well on the treatment. i am barbara, 56, married to Roy and 3 adult kids and one 17 year old daughter. Currently on mtx hydroxychloroquine and sulfa salazine. Saw the rheumy nurse today and she added pregabelin for my fibromyalgia. Everyone here is so friendly and give great support, so keep checking in and posting, take care x BARBARA
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,081
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Hi Katherine - sorry don't have any experience of the drugs but wanted to say welcome.
Julie
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 872
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Hi Katherine,
Can you get strong / longer lasting/ water resistant sun block on prescription due to risks being due to medication? xx
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Rank: Advanced Member
Groups: Registered
Joined: 5/18/2010
Posts: 34
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Thank you again for all your comments , which have made me feel most welcome. I am going back to talk about the new drug this Friday. I was tooi ill when I saw my specialist, but thanks to the Jab I feel a bit better and you have all heped me regain my focus. We cannot actually choose our treatment , but at least we should understand why we have been prescribed a new toxic drug.
Lizzie Mouse , my GP has prescribed me some sunblock, but I bet she won't prescribe anthing to remove any side effect hairiness. You can see the headlines now. Beauty treatments on the NHS!
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