Help required - I have so many questions.......

VIKI131182

Hi all, this is all very new to me and I am unsure how to get started in this forum but here goes........

I am 31 and diagnosed with RA in summer 2013. At first I was releived that I finally knew why I was experiencing so much random pain and swellings etc. I was prescribed Methotrexate, Hydroxychloquine, Folic Acid and pain killers. As far as I know these are helping me but I have only been on them for roughly 6 months and have just recently had my dosage upped. I am having flare ups still and my employers (I work as a secretary) have not been supportive. I am setting off 'absense triggers' left right and centre and am due to be placed on a 'stage one warning' next week. I do not get paid for being off work unwell and so I do not take it lightly when I need time off, but at the same time, I am finding that some flare ups are much more painfull, stressful and lengthy than others and are now causing me severe financial problems. I am not signed off long enough to be able to claim any benefits/assistance (as far as I know) and I cannot seem to find the right balance with my employers whilst my body gets used to this condition as well as my mind, and I am now facing the extra stress and anxiety that comes with approaching this topic with my boss.

As I said, this is my first time on any forum of any kind so any kind of contact from anyone who can offer any words of encouragement or advice would be most welcome. And of course, when I know more about my own situation, one day I will be able to offer advice of my own!

Looking forward to a response x

thistlegirl

hi ,
I am 35 and have had RA since I was a baby, so it is called juvenile RA. I use that as an excuse for behaving like a juvenile often!

There is a work matters forum here which should be able to help you better so I would repeat this post there but I will try to help too.

RA is a chronic disease and is covered under the disability act. I know my work does not count myJRA absences as they would other illnesses I also get time off for appointments etc. You could also call the helpline here, I strogly advise you do before your meeting next week.
This illness can be invisible a lot of the time which makes it hard for others to understand, sometimes it is down to us to educate them. You can leaflets for employers that can help explain things if you want?

It can take a while to find the best mix of medication for you and there is lots of options. 6 months is about right for a drug to take hold and begin to work. You said things were improving, you may be able to increase your methotrexate (mtx) dose if you need more but I am no doctor so I would talk to them if you are struggling.
It must of been a hugh shock getting this diagnosis but know that it is possible to live a 'normal' life, with some adjustments, once things settle down.

I hope this helps

Jenny

hileena111

Hi
Sorry I cant help....I've got Osteo so not the same meds at all
As Jenny says there is a working matters forum on here....copy and paste your post there and you might get more replies applicable to your case.
I just wanted to say welcome to the forums

Love
Hileena

marrianne

Welcome to the forum Vicky,I a sorry about your R/A diagnosis ,but these early stages there is so much that can be done to cope with pain and avoiding joint dammage ,You will find tons of support on here so please stay for the advise on work matters and entitlements ,I dont work so I am not up to speed but I am sure you will get the answers ,I am so sorry your employers are not sympathetic its really so bad of them hugs and good wishes (((((((())))))))Marrianne

barbara12

Hello Vicky and a warm welcome from me
Sorry I cant help with the meds has I have OA, has for work I do feel for you, its awful how employers can be so ignorant has to how much pain you can be in, but also willing to work through it.
I am sure you can get help to stay in your employment. ..not sure who you see..but like someone has said we have the working section on here ,so go and have a look
I do wish you well and we are always here if you need to talk,or even have a rant..x ,

pot80

It can take a long time for methotrexate to work ( up to 12 wks) so your first dose seems as though it might not have been quite enough.Hopefully the boost from the second dose will put things straight. I am shocked that your boss seems so unfeeling and does not understand that you are not just taking aspirin for headache.It is a slow process as you are finding and bit of understanding goes a long way to help. I hope things improve for you.

dreamdaisy

Hello, it's nice to meet you but I am sorry you have had to find us. People who don't have arthritis don't understand it (and why should they?) They associate it with the elderly (wrong, currently our youngest 'member' is two years old), they think there's only one sort (wrong, there is osteo arthritis and then around 200 kinds of the auto-immune versions), they think it will get better if you take some drugs (wrong, things may ease but we don't get 'better' in their terms) so we have to educate them as best we can without becoming arthritis bores (this is where the forum comes in useful. ) Two useful tools for this can be found on the interweb, namely articles called 'The Spoon Theory' and 'There's a Gorilla in my House'. Both give clear explanations to the ignorant as to how we are, and will continue to be, affected.

I began my problems aged 37, I am now 55, have two kinds plus fibromyalgia despite being on the best meds the doctors have available. I went undiagnosed for five years, and before I began anything meds-wise - you, on the other hand, seem to have been diagnosed fairly rapidly and are on the usual starter mix of meds. They can take time to work and sometimes the dosage needs tweaking to find what is right for you. It is very much a case of trial and error in the early days which can lead to a very frustrating time).

Please keep in touch with us because we know our stuff - I have been a practising arthritic for seventeen years, I've been there, swallowed this and injected that, you are talking to the initiated on here! I wish you well. DD