Rheumatoid Arthritis

[JoAnne427]

Hello. Today I was diagnosed with rheumatoid arthritis. Onset began about three weeks ago, and while I had hoped it was maybe just some strange infection I had picked up, unfortunately the specialist I met with today said otherwise.

I've searched online - and am very saddened by what I have read. The doc today said she is very hopefull I will never have to be in a wheelchair; quite frankly, that drove home what may be in store. Right now, I write this hunting and pecking at the keyboard, as my hands seem so foriegn to me. I can't even change my dd's diaper. And I write for a living - so am concerned about that also, how I will provide for my daughter?

I realize this is very personal - but anyone else out there have this? I want to go hiking - rollerblade - play racquetball - do everything with dd that I possibly can. Perhaps what I have been reading are extreme cases,and I can function just fine. Sooooo...if you have any info, I am a willing, and hungry, recipient. Thanks.

Good luck to you too, and hope you and DH can find a solution on the meds side of things.

LDN (low dose naltrexone) which is very effective with RA and other autoimmune diseases, is also used for infertility. Please google it and see. It is a safe drug and I only wish my daughter had used that rather than 3 rounds of very expensive IVF which may or may not have contributed to the RA she is now suffering from.

Annie12, thank you so much. Am googling now! So sorry about your daughter, was the IVF successful? Poor thing, hope it wasn't the cause of her RA..

Hi Smartmars

I hope you have found the information interesting. Dr Chris Steele handed the petition into No 10 on the 1st. This is for the NHS to start clinical trials for LOW DOSES Naltrexone. It has only been trialed in larger doses for drug addicts previously and then there are no toxic side effects. LDN is also used for infertility.

Not sure if the IVF caused the problem but I suspect nobody is going to research that are they? Too much money in it! I think hormones have caused candida then that caused leaky gut and that caused the immune system to go haywire. Pass the word round about LDN. There is now a database with people's experiences on it if you google LDN and database.

Keep in touch with how you go on.

There are TOO many young mothers on this website suffering from terrible aches and pains but this could also be from Vitamin D deficiency. Look that up as that causes pains. Vit D is also a hormone and the foetus takes a lot of it... Doctors don't of course think to test for vitamin deficiences. I hope mine will next week as I have an uderactive thyroid and I too want to go onto LDN for that.

Annie

I know I am coming across ridiculously conservative but I really wouldn't take a drug that hasn't been through basic drug trials yet whilst TTC. Even if it is found to be effective and safe as a treatment (which bear in mind his current meds have) there is no knowledge at all about potential teratogenic properties.

What I am doing is altering my drug regime. I was on a combination of methotrexate, hydroxychloquin and sulphasalazine. I gradually reduced my intake of the first two and increased the sulphasalzine. Once I have been off the MTX for 6 months I will start TTC.

I know it is different for men but if it is being off the drugs for a long time that is the problem, is being completely unromantic and him storing sperm while he is drug free and healthy ,in case his arthritis flares up, an option? Then trying using the stored sperm while he gets his symptoms under control.

Wallydoodle - The drug Naltrexone HAS been trialled and used for many years in HIGH doses for drug addicts and alcoholics. It works on the endorphins, nothing else.

It was found by a doctor in New York, Dr Bihari that drug addicts with HIV did not progress to AIDS when on this drug. He then tried it on a friend of his daughter who had MS and it stopped that developping. It is used in minute doses for autoimmune diseases.

www.lowdosenaltrexone.org/

www.ldnnow.co.uk

Naltrexone is now out of patent so there is NO profit to be made hence the lack of trialling for autoimmune diseases in this country. There are some being done elsewhere and there is plenty of anecdotal evidence. See Chris Steele on Youtube and other doctors. Google it. Read the article on the Health section of Daily Mail about a man with MS who was considerably better after LDN. It is non-toxic and the only side effect at first can be vivid dreams. We are being denied this drug because the greed. It is not a miracle cure but it does help greatly and the best there is I believe, side effect wise.

As I said it is a well used drug BUT in higher doses. It does not suppress the immune system, it helps to get it working again so the body can repair itself. I am sure if you google it and indeed venture onto the yahoo groups and speak to users you will be impressed.

There is a doctor in Swansea, Dr Bob Lawrence who has MS, takes the drug himself and will prescribe it. Many doctors are prescribing it now. Please google it and see what you think. It is not toxic like Methotrexate etc. anyway!
www.ldnresearchtrust.org/default.asp?page_id=91

Even autism has had good results from LDN. Google Dr McCandless

www.ldndatabase.com/

l dndatabase.dabbledb.com/page/other/StLlMoFE#

It is all very interesting, believe me.

MS, RA, Thyroid, Ulcerative Colitis, etc. all are autoimmune diseases.

Regards

Annie

Intersting Wiki article here

I've only read OP

My mother was diagnosed with RA at 37 - she is now 63. She is not in a wheel chair and the drugs just seem to get better and better (she is an NHS patient however she believes is hse had had health insurance she would have had better drugs from the start rather than having to wait quite a while for them). She has however had to have both knees replaced (i promise it sounds worse than it is) in 2008 and 2009. Both times she was walking the next day (this is the aim by the physio's), was out of hospital within 5 days and driving within 4 weeks.

She is a fabulous Granny of 6 kids and looks after my ds (2 1/2) on her own regularly and is just as capable as anyone else. The only problem she found with the kids is once they get to about 4 months and before they start to walk - but you have to remember that she has had RA for 25 years. To be honest I also think this is an excuse as she "doesn't do babies!!!"

Oh yes, she only retired 2 years ago and up until that time she was a swimming teacher at a school for 5-7 yr old boys. She had to pass a life guarding "exam" every 2 years which basically checked that she was able to jump in and bring someone to the side which she was able to do. I think about 10 years ago they bought in a separate lifeguard however from memory I think this was legal requirement rather than due to my mum having RA.

Sorry, i'm rambling.

She is also very strict with her diet - no citrus fruits, only soya (no dairy), has to be very careful with alcohol. She kept a food diary for the first year as although the drs were able to recommend she found some things were fine whereas other things weren't.

She still drives a manual.

I'm so so sorry for your diagnosis but please take my message as something positive.

Pls pm me if you would like to talk any further.

I've only read OP

My mother was diagnosed with RA at 37 - she is now 63. She is not in a wheel chair and the drugs just seem to get better and better (she is an NHS patient however she believes is hse had had health insurance she would have had better drugs from the start rather than having to wait quite a while for them). She has however had to have both knees replaced (i promise it sounds worse than it is) in 2008 and 2009. Both times she was walking the next day (this is the aim by the physio's), was out of hospital within 5 days and driving within 4 weeks.

She is a fabulous Granny of 6 kids and looks after my ds (2 1/2) on her own regularly and is just as capable as anyone else. The only problem she found with the kids is once they get to about 4 months and before they start to walk - but you have to remember that she has had RA for 25 years. To be honest I also think this is an excuse as she "doesn't do babies!!!"

Oh yes, she only retired 2 years ago and up until that time she was a swimming teacher at a school for 5-7 yr old boys. She had to pass a life guarding "exam" every 2 years which basically checked that she was able to jump in and bring someone to the side which she was able to do. I think about 10 years ago they bought in a separate lifeguard however from memory I think this was legal requirement rather than due to my mum having RA.

Sorry, i'm rambling.

She is also very strict with her diet - no citrus fruits, only soya (no dairy), has to be very careful with alcohol. She kept a food diary for the first year as although the drs were able to recommend she found some things were fine whereas other things weren't.

She still drives a manual.

I'm so so sorry for your diagnosis but please take my message as something positive.

Pls pm me if you would like to talk any further.

Hi Smartmars,

I just wondered how you found the info on LOW DOSE NALTREXONE. It is also beneficial for MS and a friend's father who has MS asked his GP for it. GP said that if the MS nurse agrees then he can have it. Good news is he can and the hospital says that others are on LDN and benefitting from it. It is sad that patients have to KNOW about this amazing drug in order to benefit from it. Doctors, in what is supposed to be the 'caring profession', are not offering it for one reason or another. It HAS been used for many years in larger doses for drug/alcohol dependents. You should go onto the Yahoo groups for LDN and RA to read others experiences.

Good luck

Annie

Hi Annie, thank you for your interest. I have only had a quick look and need to get stuck in properly. We have a visit to the hospital booked for 14th Dec, to discuss how he is doing and our plans for ttc next yera. I will certainly make sure I am well informed for then. I'll let you know though x

Hi

I think young mothers should know that pregnancy can trigger Rheumatoid Arthritis. It triggered it on my daughter and many others. Just look on here too.

Hi

My mother has Arthritis and she bought an Electro Acupuncture device. She found it really beneficial and has found a good deal of relief from this terrible illness.

I think it cost around £250 but it well worth it. If you click the link this site sells it.

Hope this helps you and anyone else too.

Julie

I have also just been diagnosed with RA - It has taken 2 years to get a diagnostic. In the meantime I have had a colonoscopy as they thought the signs were bowel cancer, A thyroid problem and still this cronic pain in my back continued.
In 2009 I climbed up Mont Blanc and skied down the face and now at certain times of the month I can't even walk the dogs!

Has anyone tried eliminating things from their diets and if so what? Have you tried adding other things into your diet like oily fish, suppliments? etc Has anyone tried Limu Plus? Or is it a complete con?
Any advise would be fantastic as I live in France so easier to get advise in English

Hi, I am 39yrs old I have had rheumatoid arthritis since I was 18yrs old back then they said it was polyarthritis because it was only in my fingers and wrists within 2yrs it was in my shoulder joint, feet ,knees, elbows etc it was then re assessed and then rheumatologist said it was rheumatoid arthritis it took 4yrs to get it controlled. until 5yrs ago I had my third and last child it spiralled out of control I have been in hospital many times because I keep getting infections, my flare ups can leave me at times unable to walk or get out of bed, clean or dress myself. The past 3yrs I have my medication changed and been on steroids continuously. I am on methotrexate, which has lowered my immune system, I also am on monthly injections of Symphoni. When I am well I am active always out of the house, I look after my kids and run the house I am very independent and a perfectionist. Since the gap in me being well and getting flare ups is getting shorter I have to start letting go and let my husband and kids help me which is very hard and heartbreaking. I used to be able to do eveyrthing despite suffering flare ups but has I am getting older the pain is getting worse and I haven't the strength has I did before. It is eating away at me, it is so frustrating has my kids are only 12yrs,9yrs and 5yrs. I am always well dressed and groomed and always try to be active, and I am slim build too. When I do the school run I never used to take my stick if I had sore knees or feet , now I have no choice but to use it some days when I do some Mums say "oh she was walking fine the other day when I saw her, and now shes got a stick". As if Im faking it, others think Im pulling a fast one for a disability scam! Despite having worked since I left school and up until my second child. They know my husband is self employed and has a successful business., and we don't claim benefits I even payed for my prescriptions until a year ago. I was diagnosed with type 2 diabetes. This qualifies you for free medication, but a lifelong debilitating illness like arthritis does not. People need to realise you have good days and bad, one day you may be fine the next you may be bedridden.I am at that age and stage in my life where I will not bite my tongue or turn deaf, " I don't suffer fools gladly". I stand up for myself now, for my kids too.