my RA story | Arthritis Information

My thing started about a year and a half ago, with some pain in some fingers, it went away quickly, then my wrists followed, a couple of bad bad nights when i was crying with pain and could not move the hand (one at a time, not both), then in the morning could't do anything with it, not even break a piece of paper in two.. but all that went away until noon... I knew something could be very wrong... I wanted to see a rheumy... suspected that infectious type of rheumatic condition which might affect the heart... did't know anything about what RA means, though I knew its name.....Anyway, to cut a long story short, i did'd go to that rheumy, because i was trying to have a baby and i wouldn't start any treatment anyway, i had waited too much the baby (had another treatment going on in order to be able to have the baby)....then the baby came, at the end of january, then after a month and a half, in march, it all started.

It began with my feet... it progressed... everything hurted, at night it was real nightmare, my mother putting the little girl in my arms so that i could breastfeed her.. then in two weeks i could't move at all one night... by this time i had the results of my first medical investigatons, very high CRP and RF, i had already been to a rheumy and i was waiting for the results of another tests....which in the end proved positive.. RA without any doubt.

 

I strongly insisted i wanted to breastfeed for at least another month, the rheumy put me on prednisone for a month, , after that nightmare night (i managed to see her the nest day), said it was safe for the baby, but the baby's pedriatician would't agree, said it was not safe..... did't know what to do, i was extremely depressed, wanted to breastfeed, but it was getting clear that i could't manage... took the prednisone for a week, felt like new, then the rest of the family and of course the pediatrician convinced me to give up breastfeeding... in two days the baby got to ate only the bottle... at least that went well...

 

so that was a month ago... went again to the rheumy...ready for medication... 10 mg MTX&week and 10 mg pred once a day... and said she can get me on a trial for a new biologic (of course I did't know if i would agree, knew nothing about biologics)...i agreed, but my CRP was not high enough to be admitted in the study, even after one week off the prednisone.

 

now i am on my fifth week with MTX, and for 12 days again off the Prednisone.. the doc wants to give another try for that new medicine...there were worse days and better days... lately quite good days... even if i don't know now exactly what good is... i mean, compared with what i experienced, now that i can walk without major pain and i don't feel pain everywhere (when i was in major pain, i had it even in my jaw and clavicula and literally everywhere)

 

Now, i have pain in the back of my knees, in my shoulders (but i can get dressed easily), sometimes in the feet, at the back of my neck, also in the middle of the spine - that is quite bad in the morning. I also have 3 fingers quite swollen, visible swelling, can't bend them except if i press them... but all in all i do not complain anymore.. i think it is quite ok to feel like this without the prednisone (at first i was very scared when i was told to give it up), i am not so depressed anymore ( i used to cry several times a day, already saw mzself crippled, and i am /// or used to be/// extremely active, plus the baby and everything.....)

 

So, please excuse my english...not a native speaker, as you can notice......also my long long posting.......and quite a messy one....i am very tired, it's evening here and just managed to put the baby to sleep...and i am very proud that my mother is not with us for a couple of days and we manage quite well... without Mother and without Prednisone...

 

my best wishes to everybody, and may we all have the good days we all deserve....

Linda

Please always feel free to come here and ask questions, feel sorry for yourself, vent...

 

Isn't it amazing how much you appreciate the little things you can do after being through such a bad experience?

 

Best wishes to you and your new little bundle of joy.

 

Keep us posted with your progress!

Glad to hear you are having some good days. Hi Miruna - Welcome here Miruna! You will get lots of support here .

Welcome Miruna - You've had quite a year and 1/2 - new baby and RA.   Wish both were good things for you.   Focus on the new baby and celebrate that wonder.   Hope the mtx kicks in soon (it can take a few months) and you find some relief.

 

Welcome Miruna, hang in there, you will get thru, I was just like you, had a baby and 3 weeks later, BOOM, unable to move, had to get lots of help, but I am still here and the baby is now 7, it has been a struggle, but you can still enjoy all the milestones and muddle thru, and your baby will grow up to be very special and caring, and will be a great comfort and help to you, best of luck, Janie. Welcome. You sound like you have a lot on your plate. A new baby alone without RA is stressful enough. Hang in there. Keep reading and keep posting.

Please don't apologise for your english or the long post, this is what we are here for so it's okay.

Look forward to getting to know you better.
hello Miruno,  welcome!   i too had just had my son and 2 weeks after his birth.  i got RA   i too struggled with the breast feeding issue.   he is now 21 years old and i would not trade one minute of it.  you have come to the right sight.   hang in there.   susanWelcome to the forum. I hope your doctor finds some medicine that works for you soon. I am sorry you have RA. I am so very happy you were able to concive and have your baby. Such a blessing. What is your anti ccp score? I am just wondering how high they want it for a study? Hi Murina...welcome! kelstev2008-05-06 19:17:52Hi and welcome. I'm glad you decided to join us. Congrats to you and baby! BOO HISS TO the RA! LOL Thank you everybody for your very nice welcome!

Janiefx - i liked very much what you said about the kids growing up... Congratulations to all mothers with RA, I know I will make it too and my girl will understand..

Pip - it's Eastern Europe we're dealing with, here you can only get the biologics for free if you get approval from a special commision from the capital of the country, and I just read an article in a newspaper about the corruption there, ..I trust my rheumy, she is the head of a big rheumatology and recuperation hospital here in one of the three major university centers from our country, she's a great person... at the beginning I was extremely skeptical, I thought she just needed some guinea pigs for research, but she explained that this is the only way to get very quickly an otherwise extremely expensive new med - I saw here on the forum that people are skeptical about trying biologics  ------ but also I read that the doctors now got to believe that very early and aggressive treatment with both MTX and a biologic has big chances ......so I hope that a new biologic means an IMPROVED one....

Millie - my anti CCP was 400 while more than 10 is positive, but the clinical study needed a very high C reactive protein. In the beginning my CRP was 48, I don't know how big it should be for that study in which i wasn't accepted, I was told on the phone the value but it wasn't a number, it was a fraction, or so i understood, and I was too busy being glad that I had not been accepted, so I don't remember the value.

This morning I went for other blood tests - mainly CRP is what i'm interested. The rheumy said yesterday that they might still put me in another clinical study in which the value of CRP is not important, it only has to be above normal. Of course, it depends on me whether I choose or not.

I have many many questions, but little time to write...the little one just woke up...

I still wonder about getting on that clinical study, of course, but the rheumy talks about it in terms of a "chance", an Opportunity, so I am quite convinced she might be right......and not just in need of guinea pigs...

Thank you everybody once again - it really is great to get in touch with people who understand and know how you feel, and YES, as someone said, sorry I forgot the name --- we surely do learn to appreciate everything, I already feel much wiser now, and would definitely fight my way through and enjoy all the good things, no matter how little, each and every day..
I skipped a question - Pip, at that time I knew nothing about rheumatic conditions, except that it might be very dangerous if you have that form which might quickly get to the heart, and that was the only thing I was afraid about. And it was clear that what I had was quite an aggresive type of rheumatism.........only that it was not rheumatism, but rheumatoid A, that is, false rheumatism..... Ah, you guys can't get antibiotics there either, right?  Or it's a lot harder?  I read a lot about antibiotics, and it all seems convincing enough though here they seem to use MTX, mostly. Or always.

 I thought I would try something else, antibiotics included, after a couple of months of MTX, if i don't see any results. 
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