PV and Rhumatoid Arthritis

[piggie50]

Hi all,

I've asked this question before, but as there are now hundreds more members on the site I thought I would try again.

Does anyone out there have PV and RA and take both Hydroxy and Methotrexate?

Many thanks

Judy x

[Twinkly]

Can I ask you ..how is it affecting you ?? I was told now I'm off the Majic trial I may be asked to take mathatrexa te Again . I was on it for 5 years before ..didnt really like taking it on a Monday every week ..made me a bit dopey ..took me off it when I was diagnosed ,4 years ago ..but I'm stiff and in pain again now ...seems we in the u.k. Are limited as to medicines for rheumatoid artheritis ..don't you agree ?? Twinkly x

[piggie50 in reply to Twinkly]

Hi Twinkly,

I had RA for 12 years and took a drug called Penicillamine. The RA was all down my left side, wrist, shoulder blade, feet and toes. This is a drug that used to be perscribed prior to Methotrexate. It was a daily drug with no side effects for me. 9 years ago my GP noticed my blood levels were increasing which they shouldn't do on this drug. I was then diagnosed with PV and as the RA seemed to be in remission the Penicillamine was stopped. I was clear of RA for about 6 years. Then 2 1/5 years ago it came back. Only my right wrist is affected now, but it is extremely painful, swollen etc. I saw the rheumatologist who wanted to start me on Methotrexate and said he had patients who take both that and Hydroxy, but my haematologist says he doesn't want me to take it as its 2 toxic drugs. Because my RA is only in one joint I said I would wait but it's getting very painful now and trying to pick up my 14 month old grandson is agony. I've heard such horror stories of methotrexate ( a bit like Hydroxy but I'm ok on that) that I really don't know what to do. I'm taking paracetamol like sweets!

Sorry it's so long.

Love to you and Bob

Judy x

[Hidden]

I have ET and scleroderma with an overlap of Lupus and inflammatory arthritis. At the minute I still function very well on Plaquenil, aspirin and treatment for Raynaud's. I am curious how this is all going to progress however because I was nearly started on MTX in January and when my platelets began to rise in November the haematologist mentioned HU - though he eventually decided my platelets were rising because of anaemia.

MTX has been mentioned as a treatment for ET. I don't know much about it, to be honest. I wonder is there just a big 'reset' button that would reprogramme our bone marrows and immune systems to stop being defective!

[piggie50 in reply to Hidden]

Thanks Shazzer1976,

Yes, a reset button would be great. I hate moaning, but that seems to be all I do these days!

[Twinkly]

I was told early on methotrexate was toxic ,it can affect your liver in a not good way .i was having blood tests every 4 weeks ,I hated it , then I was sent to hospital oncology dept ..as my testing became irratic ..then diagnosed with p.v. ...I have not been taking methotrexate for 4 years ,now I'm getting stiff again ,especially the back of my neck .and joints all over .being on the Majic trial .taking ruxolitinib for 2 years ,the doctors have been loath to start me on anything new in case it upset that trial ,,understandably ,but I saw a new specialist in January ,she mentioned a new drug ,it's called leflunomide ..in August I go back to see her ,iv got to decide if I want to try it or not ..still not too sure .. Watch this space ,, twinkly ,, xx

[RockyMtnGal67]

I have a question. How is PV diagnosed? I have been battling RA since 1997. It seems though that some of my symptoms more recently fit PV. Do the two travel together?

BTW RA S.U.C.K.S. I have to go out and work a young horse in an hour and would rather be in bed. OW.

Also, i am coming off Rituxan. It was the worst medication I have ever been on. Horrible.

[piggie50]

Hi,

As you will see from my previous posts on this thread,

I was diagnosed with RA 25 years ago and was started on a DMARD , Penicillamine. I was having regular blood tests as required for this drug. After 7 years my GP noticed that my red blood count was rising when it should have been depleting. She referred me to a haematologist who then after tests diagnosed PV. He advised to stop the Penicillamine as I was in remission with the RA, however, as on previous posts of mine, the RA has flared up this year and I am now on Methotrexate. He wouldn’t put me back on Penicillamine as Methotrexate is now the first line treatment.

Yes, I agree RA sucks! What drugs if any are you on for the RA and are your blood levels checked? ( Sorry, I don’t know what Rituxan is)

To answer your question, I don’t believe the two come together. I’ve been a member of this site for many years and as yet have not come across anyone else with both diagnosed. Apart from Twinkly above.

I know my PV is caused by the Jak2 gene, but I always wonder if the Penicillamine caused it as these drugs mess with the bone marrow.

Are you in the UK.

Let us know how you get on.

Best wishes

Judy