Trying to help newly diagnosed OH

Hi all. I've been lurking for a few weeks but not yet posted. This isn't about me, but my partner who was diagnosed with inflammatory arthritis a week and a half ago. His consultant said he wasn't happy to diagnose as a specific type of RA until he got blood test results.

He gave my OH Prednisolone at 20mg a day for 2 weeks, reducing to 5 mg a day in week 7 and 8. There will be a follow up appointment after 6 weeks when the consultant will decide on the treatment going forward.

The day after he first lot of steroids was like magic - he felt almost completely better, but he next day his calf started to be very painful. Long story short, he has 2 dvts and so has also been prescribed blood thinners for 6 weeks.

He's worried about the clots getting worse, and his leg is still hurting from them, but also the arthritis doesn't seem to be being dampened very much by the steroids any more (having said that his hands are much better), and he's still on the full dose at the moment. It's especially bad in the evenings and in the lower half of his body.

I guess I just want to be able to reassure him that he won't always feel like this and that when he gets good medication he can be better. Can anyone help with this? And does anyone have any experience of clots or the Prednisolone only working for a few days?

Thankyou.

7 Replies

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  • Hello

    Your other half is very lucky to have you!

    With regards to steroids: I've had several depot shots of steroids. They work brilliantly for a week or two, and then wear off. On one occasion it didn't work at all. So I think the treatment varies for different people.

    I've just had another depot shot, it's supposed to cover me until the new dmard kicks in. It's already worn off!

    It takes a long time from diagnosis to get the right treatment. It is frustrating, but some folks fond the right meds and are in remission for a long time.

    Sorry not much help.

  • When he gets the right drugs for his type of ra he will find a difference,but and here is the but it is a slow process getting the right drugs that work for him. Tell him not to despair he will get there in the end. He is lucky that your on his side not all partners are as good as you are in being proactive on his behalve, Vioce your feelings when you go to appts as well because he won't remember half whats been said to him as he will not only be in pain he will be in shock as well.xxxxxxx

  • Welcome to the site. Please tell your partner there is a light at the end of the tunnel once your doctor finds the "right cocktail" of meds.

    I sell beer for a living, so only a doctor will be able to give you the best advice on dvts....so I will tell you what I know of dvts...back in 1964 my mother had 3 dvts in both calves....She will be 74 years old Feburary 2017 and she is a speed walker!!! She has had 2 opereations on her dvts during the 70's. She has lived her life "respecting" her blood clots. As long as she remains on blood thinners she is able to live an active lifestyle. My mothers blood clots are hereditary. Both my sibblings and I escaped the family blood clots, but my daughter is going to be tested for the bad gene.

  • It is quite shocking how fast and furiously this family of diseases can attack, especially if you were previously a pretty healthy person. And then you look at the internet and get even more spooked. But for the vast majority of people it's ok and you get your life back - although as Sylvi says it can take a lot longer than expected. This is not something where you take a pill for 7 days and all's well.

    Anyway I went from healthy to virtually immobile in weeks. It was horrible, painful and depressing. However the drugs worked for me, and I'm now fine and have been for the last 6 years. It did take nearly a year to find the right dose & mix of drugs, so a slow road but one that led somewhere positive.

    Sites like this aren't that representative as the posts tend to be more from people who have the most difficult forms of the disease. But really the odds are very much in your favour that the drugs will work just fine. If he can, he should improve any lifestyle things like smoking, being overweight and eating a poor diet as that will help too and make his body better able to cope with the drugs.

  • My story is quite similar to Helix's and I can only echo her words of encouragement. The only thing I can add is the importance of exercise. Every little helps is a very true and useful catchphrase in our case. I wish you both all the very best on your journey. You are not alone.

  • Hi Chickenkeeper and you are very welcome here despite it being on your partners behalf.

    You sound so sensible and practical that I am sure you will ride out this distressing start of the inflammatory autoimmune disease journey.

    Your husbands initial treatment sounds absolutely spot on.

    The tapering of the oral steroids is a standard procedure prior to the first Rheumatologists appointment.

    I hope your husband has been referred immediately?

    Meanwhile, ask what his blood is being tested for. My advice is to start to become your own expert and keep notes of dates and appointments and blood test results.

    I hope the GP is testing for RF ( rheumatoid factor) and Anti CCP which is a diagnostic test for RA and your husbands inflammatory markers which are done by two tests ESR ( Erythrocyte sedimentation rate) and CRP ( C reactive protein)

    The complicated thing happens when you test negative for RF and Anti CCP but this doesn't actually preclude RA.

    When you read about people being 'sero negative' this is what they are talking about.

    Also just to confuse you further this test can change over time.

    The wait your husband is experiencing is to preclude diseases like Lupus and to find out whether he is suffering viral arthritis or reactive arthritis. There is also Psoriatic arthritis to throw into the mix and Ankolysing spondylitis ..... The list goes on.

    Treatment is always a variation on a theme, starting with with what are called DMARDS or Disease modifying anti rheumatic drugs.

    A combination of these along with NSAIDS, painkillers and steroids are used to manage whichever disease it turns out to be.

    These are called first line treatments and after this depending on severity and drug tolerance we move onto Biologics and the even newer Biosimilars.

    This initial period from diagnosis is often the most difficult and I want to echo the others and give you some encouragement to pass on to your husband. Things will get better, it won't be easy and the blood clots are another difficult issue. I'm sad to say that often a diagnosis of an inflammatory autoimmune disease can bring other issues to the fore.

    Tell him to battle on and keep positive. Don't get too hung up with Dr Google, the NRAS website is the best place to start and also Arthritis UK.

    Please come back and tell us how he is getting on and also if you need to ask anything else.

    Hope this helps a little. Good luck to you both.

    Mx

  • Thankyou so much to all of you for your helpful replies. You've said pretty much what I expected, I guess I just wanted some reassurance from people who'd been there!

    I'm sure I'll be back and will keep you posted.

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