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Pending diagnosis

Posted , 5 users are following.

katy2296
katy2296

I have suspected inflammatory arthritis in my spine and hips, I've had blood tests done and two of my inflammatory markers are up so I've been referred to a rheumatologist, but still waiting on X-ray results. Does this mean that I do have arthritis? Is there a high possibility? And what am I to expect if I do have it?

Ps I am only 20! But psoriasis of the joints runs in the family.

0 likes, 15 replies

15 Replies

  • lyn1951
    lyn1951 katy2296

    Posted

    katy - Bad news I'm afraid, you probably have proriasis arthritis, runs in my family as well, but I ws 50 before it hit me, have now had it for 15 years.

    Thats what the rheumo tells me i have, and or my own version of RA.

    I come back sero negative for RA, but also come back negative for psoratic arthritis, apparently there is a genetic test they can do.

    Are your fingers fat and swollen, thats one of the markers for psoratic arthritis.

    The rheumo will start you on the least nasty of the arthiritis drugs, and then if they don't work will start to change the drugs until they find something that does work.

    One of the drugs works wonders for me, the arthirits vanished within a few days, but had to come off it, as blood pressure sky high, as in stroke in the next few days possibility, apparently a rare reaction, according the drug company, just my luck hahahaha????, you will understand, not really funny.

    You have about 12 different drugs they can try, and they all work to some extent.

    My rheumo started me on odorless fish oil 1000mg, from day one, they do help.

    I take 6 a day, 2 for breakfast, 2 for lunch, and 2 for dinner, with food, you get less reflux that way, but even with reflux its only a mild fishey taste in the back of your mouth, you can live with it.

    Takes about 10 days or more to really start feeling the effects of the fish oil.

    • katy2296
      katy2296 lyn1951

      Posted

      I thought it did, I wanted to be prepared when I went but no it's in my spine and hips and doesn't effect my other joins as of yet.

      And I couldn't do fishy stuff the smell alone makes me gag! I don't even eat fish from the chip shop!

      Will I loose a lot of my mobility in my spine? I'm a cheerleader you see haha

    • tenthirtypm
      tenthirtypm lyn1951

      Posted

      Hi Lyn

      My daughter has just been diagnosed with RA and has been prescribed Methotrexate 10 mgms weekly with the folic acid. I was interested in the Fish Oil supplements you take... is that 1000 mgms in total daily or 6000 mgms in total? I see you say they help. All the very best .. :-) xx

    • lyn1951
      lyn1951 tenthirtypm

      Posted

      I too take MTX thats the short version of Methotrexate, I am on 35mg injectable, that i now do myself after a very patient GP helped me get through the needle phobia.

      The specialist could not understand why the MTX a gold standard drug, that works for nearly everybody, was not working for me, and did a blood test the day after taking the tablet, and I had only taken up a fraction of the dosage, thats when she told me she was changing me to injectable, I expressed my displeasure and she shamed me by saying 8 years old children inject themsleves for diabetcs, get over it. She was right.

      Regards Fish Oil, it was the speicialist that told me to take it.  I take 2 for breakfast, 2 for lunch, and 2 for dinner. Total of 6000mg of Odourless fish Oil, you can get fish oil in a fruity flavoured liquid her in australia but about 3 times the price. Reccommend taking with a meal, from experience. Disadvantage, seems to make your hair a little greasy, I keep my hair very short, pixie cut, and when i shower i wash my hair every morning, hair wonderfully lush and glossy, and hairdresser comments on 3 heads of hair in your head, and it feels so good. Also bonus and specialist mentioned this, less micro lines around eyes, she right, and no dry skin on legs, where I used to have extreme dry skin like a lizard, dodn't matter how much moisturizer I applied, if only I had known would have saved myself a fortune in skin cremes.

    • tenthirtypm
      tenthirtypm lyn1951

      Posted

      Hi Lyn

      Thanks for your posting 2 me. I thought it was 6000 mgms. It seems a lot but it obviously helps a lot so that's really good. The oil must moisturise internally that is the joints as well as the skin and hair. With the MTX have you noticed any hair loss? I guess with the fish oil it must strengthen the hair follicles. I have osteoarthritis and take MSM which I think is essentially a sulphur supplement which I find incredible. I have only taken it for 2 weeks, but I'm not sure it would help for RA for you. Thanks so much for your reply. :-)

    • lyn1951
      lyn1951 tenthirtypm

      Posted

      Probably only issue I have, and it does say on the side of the bottle, you have to watch the blood pressure, or your Dr has to watch your blood pressure as the oil can affect, and or drop that blood pressure. Talked to my GP, and said, does the oil make your blood cells more slippery, so they pass each other more easliy, he said thats it, laymans description but you are right.

      Hair loss with MTX, even at 35mg, no, but I think when i first started taking it at 10mg I had some reaction, even my liver enzymes were a little off for a while, very important that you get those liver tests done, monthly for a start, but coping beautifully since, even on the higher dosage, still have 2 monthly blood tests just to check.

      Dr has tried sulfursalzaine for me, not good.

      I have tried many different drugs, some have made me really unwell, dangerously high blood pressure with one, a rare reaction even for the drug company, so had to stop taking it, even looked into biologicals for me, and even they are a NO NO, as I have TB antibodies in my blood, and having had cancer as well, some drugs cannot be used.

  • andrew_08416
    andrew_08416 katy2296

    Posted

    Hi katy

    I'm in the same boat as you been waiting over a month now for my rheumatology appointment. Raised inflammation markers LDH. Pain in both knees and hands. My GP suspects I've got lupus which doesnt run in the family but RA does.

    Haven't had a joint xray as yet but my recent CT scan has gotten them concerned about my lungs. Joy!!!!.

    I' had cancer in the last 2 years and get regular tests. When I say they I mean my gp and oncologist. With them again this week so hopefully get some more info.

    I've read up a great deal and met with a nice cross section of people mainly patients. From what I gather things will get easier once you get to see a rheumatologist but it could take a little while.

    Stay positive

    All the best Andy

    • katy2296
      katy2296 andrew_08416

      Posted

      I was referred urgently and if I don't hear from them in a week I have to ring so hopefully won't be long
    • andrew_08416
      andrew_08416 katy2296

      Posted

      Wow katy thats fantastic.  Hopefully you will see someone ASAP.  maybe something showed in your X-Ray.  Mine was a CT Scan for organ damage, they've not scanned my joints as yet. been told I have a problem with my lungs and surrounding lymph nodes wont get the offical news until this Thursday.  But I am going to ask that they send a copy to my GP ASAP and not just the written report.

      keep us updated

      x   

       

    • katy2296
      katy2296 andrew_08416

      Posted

      So Ive had a phone call today, the next date they can fit me in is 17th April but I'm in so much pain I don't think I can last till then! Oh and I hope it's good news! X
    • andrew_08416
      andrew_08416 katy2296

      Posted

      Hi Katie 

      At least you've got a date now so that has to be something right?  

      Self Pain management is one of the worst things to go through, somethings will work one day better then others and everyone responds differently.  

      Some of the things which help for me are.

      Rest (obviously) but in a horrizontal position. 

      taking both Ibupaphin and paracetimol together (tip from the pharmacy) 

      hot baths to soak the joints. 

      creams like Deep heat.

      Support items for me its the knees and hands so I invested in braces and gloves.  Helps a little.

      Red wine helps to reduce inflammation but not with pain killers. 

      But ultimately nothing beats a good old fashioned shout into a pillow.  

      I also use music to relax and try and imagine the pain away.  A little hippy I know but for me at least it can take the edge of it. 

      Its also exhausting which doesnt help when you have no energy in the first place. 

      Best of luck 

      Andy

      x

  • tenthirtypm
    tenthirtypm katy2296

    Posted

    I am so sorry. You are so young, altho I know of someone who developed this at 17 and is now 22 and leads a normal life with a career and has lots of fun. Don't be disheartened ... it will be carefully managed by a good rheumatologist. The best and most informative websites are the nras uk and the arthritis research uk.

    My daughter has been diagnosed with RA and we have found these websites and the helpline very supportive. All the best wishes to you, and take good care of yourself. :-)

    • katy2296
      katy2296 tenthirtypm

      Posted

      I've had a very active youth, dancing all my life and love extreme sports! Unfortunately I can't take any painkillers as they are all making me very poorly so I ant move from bed most days which is making me very down, but life goes on and o just wanted to be prepared for the worst I guess, thank you for the advice and I will look at the websites
  • lyn1951
    lyn1951 katy2296

    Posted

    katy  - my specialist tells me the more I can move the better, but walking was soooo painful, and grinding and feeling as though i had stepped on a piece of loose ice from my slipping and sliding hip hip joint, I could no longer walk at all. Worked out that i must exercise, otherwise i would be in real trouble with blood clots and worse. Got in a heated swimming pool, and started swimming (treading water) and rowing with my arms while floating, with a water log to support me. When I started could only do about 20 mins, now have worked up to over an hour, has it helped YES, and made me stronger, physio's have confirmed that I am doing the right thing, my muscles are nice and strong, and that is helping with supporting my stuffed joints.
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