Hello,
Anyone out there have Type 1 and Rheumatoid Arthritis?
I have had Type 1 since 1973, Hashimoto’s since 1993, and just found out I have Rheumatoid Arthritis. My immune system is very confused to say the least! HAHA
I did not get the memo that I would get a 3rd chronic illness. I have worked hard on my diabetes since diagnosed in 1973 at 15 months! (well my parents worked hard for the first many years : ) My eyes are golden, my kidneys are spectacular, no heart issues. Basically, I have not had any of the “issues” I was raised afraid of, i.e. blindness amputations, etc.
This RA has really thrown me for a loop, it is painful and I have been ill for months.
Anyone else out there in the same or similar boat?
Thanks very much!
~Shelby
Hi Shelby:
Lordy! I feel for you. I didn’t get that memo either. I’ve had severe RA since I was 24 and Type 1 Diabetes since I was age 3. There are 3 Types of RA: Mild(much kinder), moderate and severe(way not nice). I have had a few complications long ago from Diabetes(a couple were repaired/reversed) but I’ve been doing quite Good for many years with Diabetes. As I told my Hubby about 8 years ago, it won’t be Diabetes that does me in. I truly pray for a cure for RA.
Shelby:
I am type 1 and have RA and one i cannot even pronounce, AS. i am itching to get my fourth chronic, i hear the last one with the moat chronic’s wins, now what they win, well i have no idea of that one.
So i have been type 1 for 35 years, ever since 1974, so I am right behind you. I have had RA for the last ten years. I can give you three lousy pieces of advice.
- get to Biologics as soon as possible
- work out a little, walk ride a bike etc.
- Don’t be afraid to change biologic drugs, if it is not working tell your doctor you want a change.
They will likely start you ot on methotrexate and it may or may not help. For many it does for many it does not. In the US insurance plans normally require Metho for six months before they will allow you on a biologic drug. Make ti a goal to get there asap, the quicker you get to a biologic drug the better off you will be. expirence.
Here are some of the drugs that are biologics, Remicaide, enbrol, Humira and tons of others. They are bringing more out almost every year these days, mostly because they work
Terrie8 is also has RA.
Rick phillips
Hi Shelby. I have rheumatoid arthritis, as well as autoimmune hepatitis, T1 and Grave’s disease. I was just diagnosed with Crohn’s disease. So, I know what you mean about a crazed immune system. I agree with Rick, get on a biological as soon as you can. I have been on Enbrel and Humira and they both were great. I started out on Methotrexate but was changed to Imuran when my liver started flaking out. I also take Azulfidine and Plaquenil. But the best advice I can give you is DO NOT let them put you on prednisone. I repeat DO NOT!!!
Keep active and keep moving!
Thanks Terrie, Rick, and Sarein… You are all awesome to share with me. I really appreciate it. I wish you all great health and good spirits dealing with the ridiculous world of autoimmune diseases!
So, I have been on methotrexate since June, with absolutely nothing happening. Oh, unless you call feeling like a zombie and needing to sleep for 2 straight days when I take the metho, some kind of progress. I go to the Rheumatologist tomorrow, and I am pleading, crying, demanding, doing whatever it takes to get on one of the Biologics mentioned earlier. I am attempting to fight a cold, and all fingers on my right hand have blown up like sausages…it is not pretty, as you all can attest to.
Thanks for your advice…will let you all know what happens tomorrow.
~Shelby
You are Welcome! I hope that you feel Better soon. Yes, we do have to keep our spirits up. That’s probably why Rick and I sometimes make silly jokes/comments(Oppps, sorry Rick. Not yours - Really. ).
May things go well for you at your Rheumy appointment Shelby. Yes please, let us know how it goes. Good Luck! Have a Good day All!!
hi, I’m type 1 since 1967, Hashimoto since 1997 and I want to ask a question: what is Rheumatoid arthritis? Is it what I have? Pain in my arms, hands? I have a frozen shoulder (after my open heart surgery) retinopathy. Thank you.
Hi There Brigette. Nice to see you. Your symptoms could be caused by Arthritis or Diabetes. There are over 100 types of Arthritis. I hope that you do not have any. Here is a site that describes some of Rheumatoid Arthritis(RA). It varies differently in different People, as does Diabetes. A Person may have a negative RF result but could still have RA.
http://www.nlm.nih.gov/medlineplus/ency/article/000431.htm
When I first noticed RA(I didn’t know what it was, of course), I had Bad pains in my groin area(bottom area of the hips). So I could no longer do the lotus position in Yoga. Then some of my finger joints started hurting and swelling. Then my right hip hurt so Bad one day, that I had trouble walking. The symptoms were intermittent for the first year.
Severe and Juvenile RA is definitely is in our Family. I also have Asthma(much Better), Raynaud’s(not active), borderline Osteoporosis, probably Hypothyroidism and whatever else.
I hope that this helps you Brigette. If you think that you may have RA or any other Arthritis, then do get tested.
thank you for all!
Hi Everyone,
I am going to go on Enbrol. I have to play the “wait for insurance to cover it, get preauthorizations etc” game. So hopefully in a couple weeks, I go back to SHOTS, who would have thought. At least it is once a week, and in a pen.
So, here is what was most interesting at my appt. I was asking my Rheumatologist about my immune system. Basically, when I get a cold, it turns to a chest cold, then bronchitis, then walking pneumonia, etc. It makes sense to me that my immune system is confused and does not function correctly since it is attacking my own body. He said that is not how it works, that the immune system is too complex to work that way. I just don’t buy what he was saying.
It seems logical that an immune system attacking the body is not going to attack a virus like it is supposed to. What do you all think?
I am super stoked to have found this site and meet you all!
~Shelby
Good for you Shelby, to be able to get on the biologics that soon. There were no biologics when I was dxd. Even if there was, I think that I would have had to try many other drugs like I did before our Insurance would cover the biologics. I didn’t mind trying the other frugs although most didn’t work for me. It was certainly an interesting and often, a disappointing experience.
Your immune system doesn’t protect you against viruses now because Diabetes causes your immune system to work less effectively. Added to that, Methotrexate suppresses your immune system. Indeed the immune system is a complicated working machine, as your Dr. noted. He should know what he is talking about.
Years ago when I was getting the flu shot, I asked the Nurse why would I want a shot to boost my immune system against a flu virus? Wouldn’t that cause my RA to attack my joints worse? (What a messy subject) She said the shot only targets one part of our immune system to protect against/attack the virus. She had a deep French accent, so that is what I understood her to be saying. LOL!
I wasn’t really interested but as far as I’ve understood elsewhere, originally, you were pre-disposed to Diabetes and other autoimmune diseases but something else probably triggered it. The Scientists aren’t sure what causes the immune misdirection. Thus the attack of your immune system on your beta cells then the attack on your joints(with RA) probably by another trigger or(what I thought) a sequencial consequence from the Diabetes trigger. There is much more to it then that, of course.
Make sure to take the Methotrexate as directed once a week and drink plenty of non-alcoholic fluids during the day. Thank you for getting back to us. We are Happy that you are here.
For those who have rheumatoid arthritis and who are in college, or thinking of college. Starting on January 1, 2011, the reach beyond scholarships will be available. The scholarship is for $10,000 and may be for any year of college. Here is the web site:
http://www.reachbeyondra.com/scholarship/winners.aspx
I am a 2010 winner and I encourage anyone who is in school, has RA or who has a parent with RA should strongly consider applying. This year they awarded 31 awards, and frankly it is a wonderful addition to any college financial portfolio. If you do apply, good luck.
rick phillips
Rick,
This is fantastic! I am starting Graduate School in January.
You just did did some footwork for me. I was going to research for some grants, etc from diabetes and RA organizations. You ROCK!
Thanks,
Shelby
Bonjour la belle Brigitte!
I have similar pains as you describe, of painful sometime inflamed joints…knees, feet, hands (the baby finger in my left hand often freezes in an odd way so that it causes that part of my hand to sort of depress), back, upper left arm, shoulders…mostly the left one that often feels like its becoming unscrewed (like a doll’s arm) if I lift it the wrong way too quickly…and severe pain in my neck. After xrays, I’ve been told it’s osteoarthritis.
sad to read that you have the same pain! Do you take something to help you or to prevent pain? I take paracetamol. I made the Big Blue Test more than one hour ago. This evening I will go to see a football match for the first time in my life!!! Have a nice day Linda!
Not me, but I've found a web site you are likely to be interested in.
Dr. Faustman expects to eventually find cures for a wide assortment of autoimmune diseases, and has already started some testing of what she hopes will be a cure for type 1.