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Rank: Member
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Joined: 5/15/2012 Posts: 18 Location: Essex
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Hi there, has anyone from here suffered pericarditis due to their RA. My story star like that, i'm on mtx 20mg orally and Humira 40mg every 2 wks. I saw my rheumatology nurse on xmas eve and she told me i'm in remisssion when calculating my DAS ( i haven't had a flare up for almost 4-5mths and blood test was all good-CRP 1). On 16/01/14 i woke up with pain in the back of my neck, shoulders, my back and in my chest when i breath. My symptoms got worst during the day( fever-38 degrees celcius, shortness of breath and very painful when i breath). Went to my GP and was referred to A&E were i was admitted. My CRP came back 104 and i had a scan of my heart showing a bit of fluids round it- pericarditis. Has anyone here had the same problem before, while using mtx and humira? I'm really worried.
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 312
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Hi there!
I have never used those medications so am not much use on advice.
But so sorry to hear you have been poorly and wish you a very speedy recovery.
Gentle hugs,
Fiona
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Rank: Advanced Member
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Joined: 12/3/2009 Posts: 154
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Hi Amira
Sorry to hear you have had an episode of pericarditis, especially after being told you are in remission from the RA. Never a dull moment is there?! I think it is more related to the RA itself than the drugs we take to treat it.
I had this also a few years ago and it is very painful indeed and a bit scary. However my treatment was a very high dose of steroids for a while until symptoms resolved which worked well, then the steroids were tapered gradually. I do take a baseline dose of prednisolone permanently as I have Addison's disease (have had RA for 41 years).
I do hope you will feel much better soon.
Take care, Liz
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Rank: Member
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Joined: 5/15/2012 Posts: 18 Location: Essex
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Thanks Fiona and Anna, actually i'm feeling much better. Anna, what kind of treatment were you using when you had the same problem as me? What is mxt and a biological treatment? Thanks again.
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Rank: Advanced Member  Groups: Registered
Joined: 4/24/2013 Posts: 703 Location: Hexham
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amiraalexander wrote:What is mxt and a biological treatment? Thanks again. MTX (Methotrexate) is one of a class of drugs called Disease Modifying Anti Rheumatic Drugs (DMARDs). These are traditional older and cheaper meds which nevertheless can be extremely effective for many people. Biologics are newer drugs (and very expensive £8000 a year and more.) They target specific enzymes that are responsible for the disease. You have to have failed three DMARD drugs usually before you will be considered for a biologic (you may also see them referred to as Anti-TNF drugs.) Often a biologic will be prescribed alongside a DMARD for a belt and braces approach, as in your case. Paul Barrett
Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)
Enthesitis (2012) Ulcerative Colitis (1990)
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Rank: Advanced Member  Groups: Registered
Joined: 4/24/2013 Posts: 703 Location: Hexham
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You can read all about biologics here and DMARDS herePaul Barrett
Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)
Enthesitis (2012) Ulcerative Colitis (1990)
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Rank: Advanced Member
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Joined: 12/3/2009 Posts: 154
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Hi again, I was on Enbrel injections (anti-TNF biologic drug) and sulphasalazine (DMARD) at the tiime. But my rheumatologist just thought it was another manifestation of the RA in another part of my body. Like you the CRP went sky high. So glad you are feeling a bit better Take care Lizx
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Rank: Member
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Joined: 5/15/2012 Posts: 18 Location: Essex
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Hi Liz, Thanks for your reply. My rheumatology trying to rule out Lupus too. I have some symptoms of Lupus but i'm not too sure because most of symptoms might be related to Methoraxate also such as sensitive skin to the sun,thin hair and a light rash on my cheeks(last year i went to Spain i had heat rash on my arms and back). One thing i never been sensitive to the sun before, until i started methoraxate. I hate this horrible disease.
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Rank: Advanced Member  Groups: Registered
Joined: 9/15/2013 Posts: 125
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Hi Amira
Re sun sensitivity and methotrexate: Like you I have never been sensitive to the sun-the more the better! -until I started on this drug .I took my usual dose one morning whilst on a sunshine holiday and within an hour I was itching like crazy with a heat rash. Ever since then I have had to be more careful in the sun and never tan in the same way I once did. VERY frustarating!
Julie
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Rank: Member
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Joined: 5/15/2012 Posts: 18 Location: Essex
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Rank: Advanced Member  Groups: Registered
Joined: 4/24/2013 Posts: 703 Location: Hexham
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Oh, what bad luck. Lupus is another auto-immune disease so there's always that risk. Like many AI diseases there is often commonality in the treatments. My sister had Lupus and I have enthesitis and ulcerative colitis (also an AI disease) so there is definitely some familial relationship. There's a comparison between lupus and RA here Paul Barrett
Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)
Enthesitis (2012) Ulcerative Colitis (1990)
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Rank: Advanced Member
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Joined: 3/4/2010 Posts: 576
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Hi Amira - I had 4 rounds of Rituximab with varying success. It worked well twice; I had a bad reaction the 3rd time and the last one last summer had no effect at all. I just started on abatacept yesterday in addition to 15mg methotrexate.
Hope you get good results with the rituximab and start to feel better about all this. Post and often and let us know how you get on XX Ailsa
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Rank: Newbie  Groups: Registered
Joined: 3/27/2013 Posts: 5 Location: Swansea
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Hi Amira, I had pericarditis in 2008 (it started the day of my graduation ball in fact!). It was so painful and scary. During my follow-up appointments the doctor asked me loads of questions about my family history with RA and constantly checked my hands and feet (which I now realise was to check for bumps etc). I was told I had the all clear in 2011 but I never put two & two together until I was diagnosed with RA in 2012. I've now started noticing the pain again since finding out I'm pregnant last week so will definitely be asking my doctor and midwife about it. Hope everything goes ok for you and you start feeling better soon! Xx Mrs A since 14/09/2013[/size]
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Rank: Advanced Member
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Joined: 12/3/2009 Posts: 154
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Hi again,
Yes, I am on Rituximab, currently in the middle of my 5th round of infusions. For me, no bad side effects.
I did however have to take a break from it for a year or so as I had sepsis around a shoulder replacement which had to be removed. This infection did start when I was on Enbrel for 6 years. My immune system is lowered after many years on DMARDS and biologics.
I have responded better to Rituximab than to any other drug in 40 years, which can only be good news.
Sorry you have Lupus too to cope with, but the treatments are effective.
Take good care, Liz
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Rank: Member
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Joined: 5/15/2012 Posts: 18 Location: Essex
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Hi Liz,
I’m still waiting for the hospital to contact me for my first infusion. How long did it take the hospital to contact you for your first infusion of Rituximab? I hope it doesn’t take more than 3-4 weeks because when my Rheumatologist prescribed Humira for me it took 3 weeks for me to get it. And for the 3 weeks I was in agony and at the moment the pain and stiffness is going up gradually.
Amira xxx
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Rank: Advanced Member
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Joined: 12/3/2009 Posts: 154
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Hi Amira
It can vary according to how busy they are in the medical day case unit at my local hospital, anything from 2-3 weeks. The RTX infusions take all day whereas a lot of other drug infusions are anything from 20 mins upwards, so they can get through many more patients, but we Rituximabers occupy a bed/chair/drip for up to 7 hours.
It's OK though, they give you lots of tea/coffee/water and a sandwich lunch and look after you very well.
The drug does take a while to kick in, but they give 100ml methylprednisolone and some antihistamine cover in case of side effects. The steroids help with inflammation too.
Do hope you don't have to wait too long.
Take care, Liz
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Rank: Member
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Joined: 5/15/2012 Posts: 18 Location: Essex
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Hi Liz, Thanks for the reply. Did you get any side-effect with Rituxan treatment such as hair loss? I'm very anxious.
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Rank: Advanced Member
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Joined: 12/3/2009 Posts: 154
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Hi again,
No hair loss Amira, and I haven't heard of anyone else having that side effect from RTX. The worst I have are headaches, flushing and feeling vey wiped out afterwards. Of course everyone is different, but the friends I have who are on Rituximab are pretty much the same as me, no bad side effects.
Hope this helps a bit,
Liz
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Rank: Member
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Joined: 5/15/2012 Posts: 18 Location: Essex
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Hi Liz, I got my appointments for my infusions today. First one will be on 5/03/14 and second on 19/03/14, prior my first infusion I need to do some blood test. Then followed in 3/12 and 9/12. Will keep you posted about it. Thanks so much for the advice. I'm trying to stay positive for this one. Amira xxx
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Rank: Member
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Joined: 5/15/2012 Posts: 18 Location: Essex
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Hi Liz, I've already got my 2 Rituximab infusions (my 2nd one was on 19 march), so far no big changes. I'm still getting pain but the pain is not that bad though. How long did it take for you to see a difference in your body? I hope it doesn't take long for me.
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