More confusion and questions

Posted , 9 users are following.

Hi, I posted last week about my positive RF and high CCP labs. I have an apt with a specialist in Bangkok, where I live, for Aug. 5, where I will get scans. I am trying to prepare myself mentally for all of this. My main concern right now are the drugs. Being that I have no pain or stiffness or swelling, in less I drink alcohol then I'm swollen all over for days and stiff in the legs from my butt to my feet until I sweat it out. I run and lift weights and have the little nagging pain here and there which is normal enough. If I am a symptomatic and doe have this disease are mess absolutely necessary? I understand they are to help with stopping the damage to joints and pain. Could I have joint damage and not feel it? Like most people new to this, the drugs seem horribly bad for you. Are there any drugs that don't completely knock you down? If the inflammation is not present in bloodwork do you need to take these drugs? Any advice or stories about the earliest onset of RA symptoms and drugs that have not wrecked you are really needed. Thank you.

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  • Posted

    Damn auto spell, sorry for the horrible misspells .
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  • Posted

    All drugs have side effects.  Doctors try to balance the benefits against those side effects.   If you continually worry about drug side effects you will do your head in.   
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  • Posted

    Before making any decisions on meds, remember RA is a disease with active progression unless controlled.

    Usuall  a rheumy starts with DEMARDS. Thre are many important drugs to help slow the progression, it depends how you react to them. Antiinflammataries are also important. Cold damp weather is hard on RA .

    Then next down the chain of RA drugs are the  biologicals. These are helpful for many & many who have done well on them. RA can be tricky as it eventually destroys joints. 

    I agree with you last statement. I am always grateful for all the new drugs available today. Just a few yeas ago there was very little that could be offered to help those with RA .

    A healhy diet antiinflammatory foods are helpful. Also becoming Mindful with daily tasks, as well as exercises designed for RA. It's looking at life thru a different pair of glasses, adjusting to the levels of RA and how it effects our daily lives. Stay positive and strong. 

     

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  • Posted

    I have to say it is strange to me that you have no pain etc. I had lots of pain even before I was finally diagnosed. If you do show to have RA then it is obviously in its early stages which is good news. All these drugs that are available are amazing despite how we all moan about them! Yes they do have side effects and for some they are worse than for others. I am lucky as I seem to cope well with them . I think you should not assume they are going to be so terrible and consider what will happen without them. RA is progressive and the longer left the worse the damage so I think you are 'lucky' to be able to halt RA if you do have it. You may not need such high doses at an early stage either. Its a tough thing to accept but you have got to be positive. Yes diet and things can help although as a vegetarian I have not gone down that road and just eat reasonably healthily. You may not have RA!

    Good luck and keep us informed.

    Cathy

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    • Posted

      Thank you. I love your straight up honest reply. Glad to here the drugs are not completely the devil. I agree thatvif I have it I am early on and have a good chance of really slowing this thing down. I will keep praying for all of us. Thank you again!!!
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  • Posted

    I am a bit puzzled. As far as I can tell your ownly symptoms are when have had too much to drink. You do not sy wha took you to the rheumatologist or your GP in the first place.

    Don't fret too much about these drugs. Of course there could be side effects, but there just as easily might not be. I've been on all of the RA drugs variously over 11 years and am doing fine. Some pain but no joint damage, so far.

    Bangkok has good doctors, I'm told. My only experience of medical help there was very positive. Nothing to do with RA, though.

    Take care and good luck!

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    • Posted

      Hi I intially went to the Dr. because I did have slight swelling in my right pinky and whole hand for awhile. I had been doing a daily workout with push ups planks and burpees and wanted to know if they were damaged. He said it sounded like RA and not injury so I was tested and got the results. Maybe its a coincidence and I am lucky to have caught it early.
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  • Posted

    Hiya,

    I got diagnosed with RA last November, which was kind of found by accident. I had gone to the gp about pain in my knee and been referred to physio and just by chance the nurse sent me for rheumatoid factor (which was positive) and then to rheumatologist where my ccp factor was positive and esr was high etc.

    I even had an ultrasound on my hands and it is very present in esp my left hand but i don't feel pain. My consultant says i greatly annoy him as i present in one way and he thinks one thing and then get my blood work back that tells a different story.

    I was started on 15mg of methotrexate, which i had trouble getting my head round, as i felt fine and had read so many horrible things and didn't really think i needed it.

    Fast forward 8 months and i am in pain. No one knows whether the medication is not working or if i would be even worse without it. My esr in particular continues to climb, although my consultant said his impression is without the meth it would be much much higher.

    I am having problems in my knees, ankles, wrists hips, fingers and back - which recently had an mri which said early joint degeneration (however that one is osteo and not connected)

    Somedays i struggle to get up as my whole body just hurts and i'm so so tired, other days i'm ok.

    My point is that it can just creep up on you! I also had sever nausea and sickness from the methotrexate and recently got switched to the injection. I have only had 3 but the sickness has massively improved and the only side effects i now have are the 'meth fog' for about a day and a half and a banging head for 2 days, which that is worse than the tablets!

    I am sorry for the such long reply, but i hope some detail may be of some use to you?!

    Good luck :-)

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    • Posted

      Hi Sarah

      Your story more or less echo's mine. I am now on Meth injections which don't help but am told I would probably be worse without them. Who knows? Can't risk stopping now. Just started bios so hope springs eternal.

      Good luck x

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    • Posted

      The thing i find hardest though is knowing whether they do actually work or not?! But obviously am not willing to come off and see!

      Just fed up of it all and I haven't been living with it half as long as lots of people on here!

      I feel like i'm about 90 and i'm actually 27! And tired of telling my 4 year old that "mummy can't get on the floor right now or mummy's just too tired or in too much pain!"

      Thank you for your comment, it's always nice to know that we aren't alone!

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    • Posted

      Oh they do work I know that because when I was first given methotrexate the relief was wonderful but I seemed to get immune to it and the dose just kept being increased. Now it doesn't do anything for me but as I said my docs say even tho I don't feel it doing anything I would be worse if I stopped it! I can't disprove what they say really unless I go cold turkey and stop drugs. Also now I have started on my biological drug I will still have to continue with meth. Its a minefield of 'what if's'.

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    • Posted

      Hi Sara thanks for your reply. Your experience sounds like mine. I went in for pinky and hand swelling after what i think is injury from vigorous workouts. Your experience sounds awful with meth. Your on injections still feel terrible for a few days and am in pain. Does not sound promising.
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