Help

dobsey

Hi everybody,
i suddenly awoke on holiday one morning and found i could barely move without pain, everywhere,that was August, end of.
I have been diagnosed with Polly RA, if that is how you spell it, where every single part of my body is being attacked including internal organs.
Can you tell me, does this affect eye sight as mine has totally worsened in a few months, need new glasses, when i only had new prescription ones in february.
Also, have tingling in face all the time, is this normal.
Doctors seem to be ignoring these.
Finally, specialist has put me on Methotrexate, but i read the new biological medicines are better but the nhs guidelines are try this first in two six-month periods before using the biological medicines as they are expensive, Are they better does anyone know, as i see him saturday week and want to go armed, as i want best treatment.:-)
Any help you can give me would be very welcomed.
Thanking you all.
Dobsey :-)

Boomer13

Hello, sorry to hear you have been diagnosed with RA. It is a disease that affects the entire body, but I don't have direct experience with RA, as it is psoriatic arthritis that I have. You are best to ask your doctor about your eyes and your concerns regarding disease effect on them.

The biologic medications are not necessarily better than methotrexate. Methotrexate is an excellent drug but it doesn't work for everyone. I think for a lot of people with RA, it's an excellent drug but some have intolerable side-effects and for these people either a different DMARD (of which methotrexate is one of three or four) or combination, is beneficial. Failing two of these means a person has biologics next to try. They don't work for everyone either, so are not necessarily "better".

Some illnesses, like ankylosing spondylitis are best treated with biologics because of the type cytokine (inflammatory chemical) implicated in the disease process.

Best wishes to you.
Anna

dreamdaisy

Hello, it's lovely to meet you and I hope we can help with information and support. I think you are referring to a 'poly-arthritis' which to me smacks of 'inflammatory arthritis', in other words they are not sure what kind you might have. There are around 200 versions of the auto-immune type (I have one of them, psoriatic arthritis) but for a few years I was classed as an inflammatory case. The label eventually changed but the meds? No.

The anti TNF meds are very expensive so I doubt very much that you will be put onto one of them until you have tried the more standard treatments, namely methotrexate, sulphasalazine, leflunomide et al. Yup, they have 'scary' side effects but those of the anti TNFs and biologics are not that easy to deal with either. Potential side effects have to be listed but that doesn't mean that they will happen. I am currently on injected humira, injected meth and sulph and have very little trouble with any of them (I am seventeen years in and have tried many meds). I had to try (and fail) many of the standard DMARDs (disease modifying anti-rheumatic drugs) and NSAIDs (non-steroidal anti-inflammatory drugs, you may also be given one of them) but you may not have to go through all of that. I know that my hospital now routinely puts people onto them after six months, not the four years it took me.

I have to go and cook but I will be back later (or if not, tomorrow). I wish you well. DD

stickywicket

Hi Dobsey. I presume you are writing of polyarticular arthritis. Any form of arthritis is scary at first especially when several joints are affected. One feels under siege. However, do bear in mind that, because internal organs can be affected, that doesn't mean to say they will be.

I think we all want 'best treatment' but, as Boomer has explained, that doesn't necessarily mean anti-tnfs. I've been on methotrexate and hydroxychloroquine for 13 years now and they are holding my RA at bay nicely. I see no point in taking a sledgehammer to crack a nut when a simple nutcracker will do the job adequately.

I can't relate to the eyesight or tingling problems.

Starburst

Welcome to our lovely little corner on the 'net, Dobsey. It sounds like things have been happening very quickly for you and I'm sure you're quite frightening and confused.

I agree with sticky on this....

stickywicket wrote:

I see no point in taking a sledgehammer to crack a nut when a simple nutcracker will do the job adequately.

Give the methotrexate a whirl, it has been shown in studies to be very effective. If it does not bring adequate relief, you have the biologics up your sleeve and you're very early days, so there still is time to get the disease under control.

I know it's hard but try to trust in your specialist, they do know best. However, talk to them if you're feeling anxious. That's what they're there for.

Take care.

dibdab

Welcome aboard Dobsey- sorry you had to find us.

I recently read an article about international research which found that methotrexate taken in combination with other DMARDs such as sulfasalazine and hydroxychloroquine sulphate are as effective as many of the biologics. Don't despair- there is all manner of treatment out there, it just takes a while to find the best combination for you. When we first have a diagnosis there is so much to take in, please try not to panic-sometimes doing all the reading around, particularly on the web- is a mistake because we can scare ourselves witless.
:?
Deb x

thistlegirl

hi, I agree with all that has been said. You are seeing a specialist and the methotrexate works very well for a lot of people.

You mentioned your eyes, I have Juvenile RA even though I am now mid thirties. A linked disease in the eye is Iritis also Uveitis. This is swelling in the back of the eyes. Mine appeared when I was 18 and my vision worsened slowely until it was like trying to see under water. it was quickly diagnosed and is treated effectively wìth eye drops. I had no long term loss of vision. have you been to your optician re your eyes as they may be able to see the inflimation with their gadgets. I went to my Gp and after a quick look and my history with arthritis I was sent to the eye hospital to get it checked- by that point it was quite advanced as I hadn't mentioned it to anyone- teenager!

I wonder with your very new diagnosis this could be overlooked so if someone has not looked in your eyes yet ask them to. It may be nothing but it could be something and the more time the eye is inflamed the more damage it can do. fyi the methotrexate is a treatment for the eyes as well so they may be thinking of that.

hope this helps

thistle

[Deleted User]

Hello and welcome!
I know that AS can do damage to your eyes, but I have no idea if that is the case with other forms of arthritis.
"Biologics" sounds somehow harmless. But apparently they are heavy stuff. I can't be treated with them because of an aggravated risk of strokes. So I wouldn't necessarily say they are the "best" treatment you can get.

barbara12

Hi dobsy and welcome to the forum
Sorry I cant give any advice, but I just wanted to wish you well , and hope you get the right treatment for you very soon.