A Women's RV Forum run by Women RVer's!

I know I don't post often, but I do stay in touch reading almost every day. Have no where else to go for information as my Dr. is simply not very good. Have Kaiser here in N. Calif. & was happy all these years with it until my Drs. started retiring & the new ones now on staff aren't very good. (I think they work for the drug industry cause their main reply is....I'll write you a prescription for a drug etc., etc.) Anyhow, I have no immediate family left so can't check with them & none of those I know have similar complaints.
So here I am asking your opinions.
Does anyone have Arthritis? or what a nurse called it today RA ? I finally filed a complaint today as I need help/answers and am getting no where with this doctor. The gal said she would get approval for me to see a specialist (Rheumatoid Arthritis Doctor) . I just want to know if anyone is familiar with this condition & how do you manage it ..... I cannot sleep more than an hour or two at night because my hands & arms & legs start hurting so bad & it wakes me up. My ankles & feet swell & my hands & fingers swell...cannot close my hands anymore. I sort of limp along first thing in the AM because everything is stiff & hurts...
There has got to be some way to control this or at least make it less painful. I asked Dr. for a diet of what not to eat or what to eat to help deal with it but he had no answers for me. I am highly allergic to antibiotics & when I was ill two months ago, 2 out of the 3 medications he prescribed caused severe reactions to me....even though I warned him & told him to check my records carefully before he prescribed anything. Obviously he didn't take my words seriously.
I am so depressed over this & just want to feel better.
I would really appreciate any suggestions anyone might have.....
Thanks in advance.....

So sorry for this blow... you will be ok! with any auto immune disease your outlook can help you... take it easy do things at your own pace... rest is important... diet and exercise are also important... my twins both have ra... I have three auto immune diseases...
Some get infusions that help... I take gabapentin and tramadol as well as ibuprofen... not sure about spelling here...
As with so many things that happen in our lives attitude is so important... we are here to boost you and give you encouragement...
Take care...

I have RA and also have Kaiser Northern California. I was referred to a rheumatologist as soon as it was diagnosed. I did see one at the South San Jose facility, but when he retired I selected a new rheumatologist in Walnut Creek since I live in Dublin. Currently I take methotrexate on a weekly basis and get infusions of Remicade every 8 weeks. I also take folic acid, 1,000 mg per day. You need to talk to someone within Kaiser and get referred to a rheumatologist. Without the medications I take now I would be disabled. With them I can RV and carry on with my life. PM me if you want any further information or help.
Sandi

Good advice Sandi... I also have taken all of those drugs except the infusions... glad you are able to be a resource for her...
Sometimes you need a change up on meds as they seem to lose their effectiveness...

I also have RA and had all the symptoms you describe. I was put on Enbrel self injections in 2005. Well now I am on Rituxin infusion every six months and it is working wonderfully. Also fully paid for by Medicare and my supplement. It is different than what Sandi is on as there are 2 different kinds of medications or biologics as they call them. Sandi is on a TNF inhibitor (as is Enbrel) Rituxin infusion works on marked B cells and it is working great for me and I love every 6 months (2 infusions 2 weeks apart then in 6 months). I was totally happy with Enbrel BUT not the cost to me.

I sure hope you can find a good Rheumy as I love mine, he is great. Good luck to you

karen

Thank you for your help..... Sandi... I asked for a specialist yesterday when I filed my complaint. I was told someone would respond. My 'Doctor' refused to refer me, saying he would like to take x-rays to determine joint damage/problems.....????? I'm kind of not wanting anymore x-rays as I've had so many lately. Doctor is a family/adult medicine doctor & not a specialist. One way or another I really don't want him determining my condition as I have very little faith in his ability so far. He mis-diagnosed my Bronchitis Pneumonia 2 months ago & gave me the wrong medication.... anyway, am waiting for specialist to contact me. A friend of mine suggested that I try this product that has helped him a lot. So I did & it did help until the antibiotics I had to take for the B/Pneumonia messed up my system....Anyhow, it's called 'Supple' & it contains Chondroitin & Glucosamine. I'm taking it now as I'm hoping as the antibiotics weaken in my system, that this will start working again.
Just sharing this as I am so very frustrated. I still have my RV but was considering selling it as I didn't think I could drive it anymore with all the limitations I have now....After reading the posts I've decided there might be hope for relief for me so will keep it in storage for a while yet. Thank you Kathi and thank you Sandi.....

You need a new doctor!! Obviously, he is not taking you seriously and actually "disbelieving" you!

Time to change, for sure. I am a strong believer in female doctors because they tend to take women patients more seriously.

If you can take NSAIDS such as Aleve and Aspirin, they help with swelling and inflammation which is just what RA is. Tylenol relieves pain but not inflammation, so it isn't very good for RA. But most importantly, get a doctor who will treat you seriously and refer you to a specialist.

Got a call today from a dept. connected with Complaints....Gal said they would submit my situation to a committee to see if I am in need of a specialist referral.... I cannot believe this is happening to me...

All good suggestions. There are several types of arthritis, including Osteo arthritis, basically a wear and tear disease, Rheumatoid arthritis, an inflammatory disease, and Psoriatic Arthritis, which people with the skin condition can get when their disease inflammation attacks their joints. You need a correct diagnosis before correct treatment can be given. You need, as said, a rheumatologist- a doctor who specializes in the inflammatory type arthritis. That said, any doctor could order the blood test which detects the signs of RA. But it takes that specialist to know what to do with those results. I hope you get that referral. It may still take X-rays to check on damage, but it's the blood test which will determine treatment. There are lots of different treatments both pills and injections, and more in the pipeline coming. Aspirin, Ibuprofin, and Naproxen are all anti inflammatory drugs, just be careful as they can cause stomach irritation, even bleeding in some sensitive people. Tylenol is not as stated above anti inflammatory but may help pain. Glucosamine and chrondroitin, as well as MSM will help relieve pain in Osteo arthritis, and help rebuild joint fluid and cartilage with Osteo arthritis, but RA needs anti inflammatory. There are diet things you can do. Look up Dr Andrew Weils anti inflammatory diet. Also tart ( unsweetened) cherry juice, usually from Montmorency cherries is said to help both arthritis and sleep (has precursor to natural melatonin as part of its makeup- in other words not added). I order my tart cherry on amazon using prime free shipping and get it by the case and drink a shot of it before bedrime to help sleep. Mild exercise is highly recommended to keep joints mobile. I dont have RA or Pa luckily i only have mild osteo arthritis, but most of my learning comes,through dealing with my husbands long history of psoriatic arthritis and sister in law with RA, which their Mother also had. Wishing you all the best.- Velda

Agree with JudyJB, you need a new doctor. Can you switch to a different primary doctor and go from there? It might be worth the effort. You definitely need to be able to trust your doctor and believe you are getting the best care.

Kerry who never gets on has a something similar to RA a auto immune problem there are web sites that will give
you information
she has also gone on a paleo diet which helps with the inflammation and can tell when she hasn't been good
do some research think you will find the help you need...and find a new doctor easier said than done but
do what you can to find one ok?
sheila

You keep complaining if you are not getting satisfaction from your doctor!!! I too have Kaiser. The squeaky wheel gets taken care of withKaiser. Refuse to see your current doc and ask for a new primary doc! You also need a rheumatology doc for RA! Keep insisting.
I had a crappy doc when I had the horrible leg pain. My regular doc was unavailable. I got a different doc when I called back and complained.
So glad you posted here. Hang in there, and, keep us posted.
Lyn

This is Kerry, not Sheila. Actually, xrays of your hands and feet aren't a bad place to start as they'll note joint degeneration if RA. It sounds as if someone is finally listening - you need a lot of blood work to help determine what's going on - and then meds on a trial and error basis to slow disease progression and deal with symptoms. Diet helps a lot - autoimmune paleo - you can google it - in a nutshell; no nightshades, no legumes, no grains, no sugar, no dairy....fruits,veggies and meat, chicken or fish. I have something called Mixed Connective Tissue Disease - an overlap autoimmune - I have symptoms of lupus, RA, sjogrens, scleroderma, have Raynaud's and fibromyalgia - also have osteo arthritis. All fun times. Keep a positive attitude, move as much as possible and clean up your diet - and demand that you're seen by a rheumatologist - a doctor who specializes in autoimmunes - this is NOT all in your head.

There are a lot of good links on a website I've been working on - mctdfoundation.org. Feel free to come poke around! On another note - Sandi - I'd love to talk to you about Remicade - don't know if you're on infusions - but it's medicare will cover in terms of biologics and I suspect it's in my future. I need to know how to deal with the infusions - although I know there's an infusion center in Lake Havasu - will I need a driver? Why didn't I know this about you? I know - I'm wrapped up in my own world - you don't have to answer that - it was rhetorical - but I would love to hear a little bit about that. I'm in San Jose the end of this week through the 26th - don't know when you'll be home, but.... 541.390.7570 Kerry.liliedahl@gmail.com

Good luck with your journey, Excel! Oh - I'm off to buy black cherry juice on Wednesday - a dear friend who winters here in Quartzsite has RA and absolutely swears by it as well - as well as turmeric.

Sheila. Can you tell Kerry I sent her an email? Thanks.
Sandi