New diagnosis

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dctor diagnosed me with RA despite all negative blood work. Diagnosis based on swollen, red, stiff and painful fingers. She wants to start me on methotrexate and I am n a quandary as to what I should do. I have been on prednisone twice for this with some improvement but it's not gone by any means.   Anyone else start on meds with negative blood tests. CRP was mildly elevated but everything else normal. 

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  • Posted

    Do you have psorasis on your skin, you may have psorasis arthirits, swollen hand and fingers are part of diagnoses I'm afraid.

    If you have this its not so much as getting over it, but controlling the bad side effects.

    MTX started me off on a very low dose, about 5 mg, and then as my liver coped and my arthritis didn't improve, rheumo upped the dosage I am now on 35mg injectable once weekly, and my arthirits under some sort of control, which is good.

    I notice that tumeric seems to help with inflamation in my joints, and the fish oil, prescribed by the rheumotogist, 6000mg daily, 2 for breakfast, 2 for lunch, and 2 for dinner, with meals, otherwise unacceptable reflux, still get some, also seems to help with the feeling of stiffness and genral soreness of joints, bonus is it helps with very dry skin and as speciliast said, you will notice the micro lines around your eyes will also disappear because of the fish oil.

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    • Posted

      It was the chemist when I took my prescription in the first time, you must remember this is many years ago now, who explained to me he could supply exactly the same from the health food section for a fraction of the costs, so I just go to the chemist and buy odourless fish oil, 1000mg capsules, they are a gold colour and huge, but you do get used to swollowing them down. I have tried krill oil, supposed to be better, but not for me, just upset my stomach, as it did for a neighbour. Remeber to take with food, they disagree with you less that way.
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    • Posted

      No rashes. Did have strange symptom with dry, cracked lips for about 8 months right before fingers started swelling. My lips felt like they were cardboard. Nothing helped. I tried everything. I do think it had something to do with this diagnosis.
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  • Posted

    Yes. 20% of RA sufferers have negative blood tests.

    I was clinically diagnosed and put on prednisone and MTX right away to prevent joint damage. It worked.

    Like you, I had stiff swollen fingers and wrists at the start.

    Luckily I have not had any side effects so far.

    Don't expect it to go immediately. The start of your illness is always the worst and it takes a while to find out what works for you and for things to settle.

    Take heart!

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  • Posted

    Thank you for the info. It's nice to know I'm not in this alone. I worry about the side effects of such strong drugs. Do you catch more colds etc while on methotrexate? How about hair loss? What other things may I experience? I appreciate all the help. I'm frightened to start the drug but hopefully will be able to help someone else some day when they are starting out.

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    • Posted

      No extra colds. Some hair loss, not much.

      I had a little celebration when I took my first dose after resisting for two weeks. We went out to dinner. A big glass of water after the meal, a big ta-da! Blocked my nose and down the hatch!

      Much laughter.

      Don't worry! Enjoy!

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    • Posted

      Dr's told me I would be maybe have more colds, so watch myself, interesting that since I have been on MTX I have had less colds and infections than I have had in years. 

      I must admit when I was having my hip replacements I didn't take my MTX that week, although not a medical requirement and Dr's didn't mention in pre-surgery appt, and also if and when I have had a nasty infection, only a couple in ten years, I also don't take my MTX as a precaution.

      I am self medicating I know, but have the approval of my specialist, she is very pleased that I can make a judgement on myself and apply

      some common sense, of course feel the difference in my joints, very sore. No hair loss, doseage not high enough to affect your hair folicles I am told.

       

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    • Posted

      Is it ok to go off suddenly?  I was wondering about that. Do your symptoms increase that week? From what doctor said today I will take 3 pills in the morning and three pills that same evening, once a week. She said if I have a problem with the oral med I can switch to the injectable. Did you have problems with oral med?  I was on 20 mg Prednisone and have been weaning my dose down. Doctor said today to go back up to 20mg daily. Said it helps methotrexate work better. All this is new to me. Hate being on medications at all but don't seem to have much of a choice. 

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    • Posted

      Only problem I had with oral, is my blood tests were not moving, my infamation levels were still as high as ever.  So specialist had me have a blood test the day following my medication, was only taking up a fraction of the medication, so changed me over to injectable. Regards when i have missed a dose, joints more swollen, and sore, so very much aware that I have missed a dose, but other than that no side effects.

      I too only take medication only because I have to.

      I remember my grandmother, and her hands were all clawed up, had problem even feeding herself, as she couldn't lift her arms without immense pain, I have arthiritis on both sides of family so knew what I was going to get.

      Nana recognised that my knobly and slightly twisted joints were the begining of problems when I was a teenager, my little fingers are the worst, she said hers used to look like that, but modern medicine has stopped a great deal of damage.

       

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  • Posted

    My blood work shows negative but I am n Methotrexate and Sulfasalazine.  I quit for four months and very sorry I did.  I had so much pain.  Now after three months back on I feel better though sometmes I have more inflammation than I'd lke.

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  • Posted

    No. If you must go off and I certainly don't recommend that, wean yourself off.  I moved from Oregon to Washington.  I felt so good I felt I did not have RA and that it must have been in my head.  Well, the pain got worse each week.  I will never quit again.  At least I now know the drugs do help??

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