another newbie with questions

wrenis

Hi everyone,
I posted in the helpline forum before but it was suggested I would find it helpful to introduce myself in the "living with" section. so here i am.
My story in a nutshell, i am female, 37 yrs, in good health normally... I flared up for the first time in Feb. Since then, the attacks have come and gone in most of my joints, mainly hands, shoulders, knees and ankles. In the past few months the flare ups have only happened about once a month, around my "time of the month". The docs prescribed several different meds, the latest being methotrexate, prednisone and hydroxyquine. I stopped taking all meds after the first week because my symptoms went away. I didnt think the meds could work that fast, so was thinking/hoping that what I had was caused by a virus and I was getting over it. I am now 2 months into not taking anything. Last month it flared for a few days, went away for the rest of the month and flared up again yesterday mostly in my knee. The attacks seem to be less severe, or perhaps i'm just used to them by now. The docs did lots of blood testing and nothing came up in the bloodwork.
it would be nice to think all of this will just go away, but after reading this forum it sounds like lots of people have gone through a similar process before being diagnosed. does anyone have any suggestions? has anyone else noticed a monthly cycle? anyone heard of a virus triggering RA?
any help would be greatly appreciated and thanks to all of you for a great forum.

Wonkylegs

HI & Welcome to the forum

I can sympathise with your not wanting to take the medication, I hated it for so long a time, but you may find that there comes a time when you can't put it off.

I know that people are given the Disease modifying anti-rheumatic drugs (DMARDS) like MTX a lot sooner these days than they used to be so that any joint damage is kept to a minimum. They are really keen that we keep our joints in as good a condition as possible, and that is what these drugs help to do.

As for your monthly question, I agree and there have been several threads on this in the past, that many of us find our symptoms worsen at that time. However, no-one has been able to explain why ....... but we are encouraged to listen to our bodies, and also to chart what we feel and when, so maybe keep a symptoms diary so that you can show it to your consultant / GP next time you see them.

I am not sure whether RA can be triggered by a virus, but if you look at the info on 'Reactive Arthritis' you will see that that can be triggered by a virus or an infection.

hope that helps,
take care
Wonky

wrenis

thanks Wonky
BTW my brother was diagnosed with reiter's syndrome about 10 yrs ago, so there seems to be something in the genetics. I was apparently tested but nothing came up. (Isn't reiter's is the same as reactive arthritis?)

Wonkylegs

er .... not sure about that!

Rainbow77 is the 'resident expert' on all things Reactive Arthur related, although there are others on here who have had ReA

she pops on here every now and again so will maybe spot your post.

joyful164

PMR can be triggered by a viral infection.
The year before I was diagnosed with Polymyalgeria Rheumatica last year, I went to Inverness on holiday. I had just returned from a aholiday in Ireland. Somewhere along the way I got this viral infection with left me with pleurasy, ended up in hospital. that was in 2007. Was pretty bad for almost a year and then the PMR started which affected the neck shoulders, arms and thighs and knees. After 48 hours on 15 mgs of steroids the flareup went down. Was told symptons good reoccur from time to time. Perhaps you could have this. My PMR occurred on top of having RA and PA. Perhaps needs checking out a bit further.
joyful

wrenis

joyful164 wrote:

PMR can be triggered by a viral infection.
The year before I was diagnosed with Polymyalgeria Rheumatica last year, I went to Inverness on holiday. I had just returned from a aholiday in Ireland. Somewhere along the way I got this viral infection with left me with pleurasy, ended up in hospital. that was in 2007. Was pretty bad for almost a year and then the PMR started which affected the neck shoulders, arms and thighs and knees. After 48 hours on 15 mgs of steroids the flareup went down. Was told symptons good reoccur from time to time. Perhaps you could have this. My PMR occurred on top of having RA and PA. Perhaps needs checking out a bit further.
joyful

i have some steriods the doc said i could take in the case of a flare up. so i think i'll try taking those and see what happens. he said i could take 25 mgs and wean off daily from there. regarding PMR, joy, it's possible since nothing has turned up in blood. but after reading a bit about it, my smptoms are not the same, mine seems to be more bone related.
whatever it is, it's certainly frustrating. just when i think it's gone it comes back for another round

elaine5000

Hi - Another condition that is worth checking is Palindromic Rheumatism (PR). There is lots of info on the IPRS website.

http://www.palindromicrheumatism.org/syptomsanddignosis.shtml

I was diagnosed with this about 8 years ago. It's an intermittent type of arthritis that can roam from joint to joint and flares can last for hours or several days at a time. Mine seems to be hormone related starting when I went through the menopause. I have it mainly in my hands, wrists and feet but it often moves to the larger joints too.
All my blood results and x-rays have come back normal. Only an MRI showed Inflammation present.
I have been taking Hydroxychloroquine for 18 months which is working for me. You do need to take this drug continuously as it is designed to slow the condition down. It took about 6 months to start working but some people can feel a difference in a few weeks.

colinone

Hi Wrenis , There is a new blood test available now that can detect arthritis early, you ask your GP about it.
Colin

frogmorton

Hi Wrenis
Welcome to this forum from me!
Hasn't veryone given you loads of information?
Seriously though I have to agree with Wonky that the meds you have been given hydroxy and mtx are there to save your joints from damage. Theses things do flare up and down and loads of us have no difinitive diagnosis.
You could try and ask for the blood test colin referred to?
I do know what you mean because I have been so well too - that you think maybe they got it wrong and all will be well....?
You take care
and good to have you on board
Toni x

ramummy

Hi Wrenis - no advice from me I'm afraid as I'm newly diagnosed - loads of people better qualified than me on here! I just wanted to welcome you and send hopes that your symptoms go away!

jaspercat

Hi Wrens, just wanted to say hello, I am 51 and have been diagnosed for 13 years, I understand why you are loathe to take medications, I was too, but DMARDS will help to slow down the disease process, so really are a good idea, I am on MXT injections which do seem to help love Jaspercatxx

shonaarnold

Hi I've just been diagnosed with PA and RA, the new blood test is called an anti ccp antibody test and is much more sensitive than the rhuematoid factor test. My GP had never heard of it so you must ask for it specifically. Lots of people with RA have a negative rheumatoid factor test and this is how they slip through the net. The anti ccp test will show up early onset RA and it will also be able to indicate how aggresive the disease is likely to be and the risk of damage. I would recommend you specifically ask for this test.

Hope you get sorted soon

Shona

lindalegs

Hi Wrenis and welcome to the forum,

RA is estrogen based and this is why more women suffer from it than men – my eldest son was told this by the GP when he went to be tested for arthritis. It also explain why women get flare-ups during puberty, childbirth and the menopause and why we can feel worse around the time of our monthly period.

From what I understand some people carry the faulty gene that lies dormant in our bodies until something like a virus or hormone swing triggers it off.

Some people can also have grumbling joints in which arthritis appears for a few days/weeks in a particular joint and then it moves on to another joint and so on moving around the body. It can then disappear again for a while before raising its ugly head again.

You don't yet know how badly you're going to be affected, if at all, but it may be wise to talk to whoever prescribed your drugs to let them know your decision about stopping your medication.

Hope this answers some of your queries.

Luv Legs

wrenis

thanks so much everyone for you support.
I had a new test for RA done last bloodwork, but do not know what it was called. I think it had something to do with latex being the reagent... but i dont remember the test name (if this rings any bells for anyone?) I will ask my GP tomorrow. If I havent had the ant ccp test I can speak to her about getting it done asap. Thanks for the tip on that!!!
It was my rheumatologist that prescribed the drugs and he said it was up to me to stay on them or not.(but to take the prednisone in the case of an accute flareup)
He said if i could manage without them it was my choice. Of course I was not flaring the last time I saw him and was really of the mindset that I was recovering.

The current flare up seems fairly mild and is moving quickly. But I feel pressure to be better. And that is really making me feel stressed. It feels like people are tired of this process, the support is getting less and less genuine.
Thanks to everyone on this forum for taking the time to write back and give advise, at least we aren't totally alone in this!!! feel better today everyone!!

woodbon

Hi glad you found the forum. It sounds as if the Reummy is putting more pressure on you by making you feel somehow to blame. Thats not how you should feel. You have an illness and need help to control it, and as I see it once you've made the decision to ask for help, then the pressure should be on the doctors to give you help and assistance. Yes, you do have the right to take the drugs offered or leave them, but the doctors should explain what benefit the drugs will do and why they are prescribing them.

I hope you have a medic you can discuss things with maybe a nurse or GP? I hope you soon get over this bad patch and sort things out. Love Sue

wrenis

Thanks for your kind words Sue.
I HAVE been putting pressure on myself, I've never been sick in my life before. Generally when I get regular sick, eg. the flu, it's gone within a day.. I have an excellent immune system and am in good shape. I hike and rock climb regularly--up until this year.
I just want to be better. I'm sure everyone on this board can understand/sympathize with me there.

I booked in an appt with a naturopathic doc on friday, hopefully something good will come of that.

frogmorton

Hi Wrenis
You can rest assured that the support from all of us IS genuine
Good luck with the naturopath.
Let us know how you get on and take care
Toni x