Adult Onset Still's Disease and Rheumatoid Arthritis

Hi all. I'm Cate. I have AOSD and RA. Many article said that it's known patient with AOSD will have RA and AOSD will give negative antibody test for RA. But the fact I have both of them. My doctors gave me many medication but all of those were not working for me. I have allergic with steroids. I cannot get MTX as I have high ALT/AST. The other medicines caused me get another disease. It's so difficult to get agent biologics in my country as it wasn't on the drugs list in my country. So I didn't get any medication till now as my doctors have given up to my condition. I have painful from my head to toes especially severe painful in upper and lower abdomen. Maybe there is someone of you who have problems like me, please share me. Thank so much

[ITYFIALMCTT]

That sounds like a horrible combination. We've had a couple of people post about AOSD recently, I don't know if there might be something there that is relevant to you: healthunlocked.com/nras/pos...

[Hidden in reply to ITYFIALMCTT]

Thank you ITYFIALMCTT for the information. I've read the link you gave me. Theoretically people who suffer from AOSD don't suffer from RA. But in reality I got both with conditions not responding with drugs. So horrible

[dwsurquhart]

If you have AOSD have your doctor put yoy on Anakinra (Kineret) it is a biologic that was designed for AOSD. It is a daily subcutaneous injection that you can do at home.

After 3-4 weeks if you have no relief have the doctor change you to Actemra (Tocilizumab) . Also an AOSD biologic. I am currently being treater for AOSD with Actemrs and it worked wonders withing the first 2 weeks after my first infusion.

I was on Anakinra for 49 days and it did nothing. My rheumatologist said if the Anakinra works you will know within the first week. I am stubborn so i stayed on it for 7 weeks. Had to give it a try ando no avail.

Started the Actemra and withing 3 days I started to feel better and the blood work 14 days after showed my inflammation go from 152 down to 1.8.

Hope you get the treatment you need and quickly. So you can have better quality of life.

Scott

[Hidden in reply to dwsurquhart]

Hi Scott. Thank you for telling me about yourself. How long have you got AOSD? And what organ was being attacked beside your joints?

No Anakinra in my country. Biologic agents don't entrance to my country. The treatments here are conventional medicines, such as DMARDs and steroids. I cannot use steroids as I'm allergic to steroids and I cannot use DMARDs as methotrexate has no longer logged into my country. I also cannot use Imuran as it causes my stomach pain be worse. Beside that I have high ALT and AST so I cannot take that medications. Therefore my rheumatologist gave up on my condition and I had to find my own way to treat myself with vitamins but my condition still did not improve. Every month my condition gets worse.

Do you know golimumab? Is the function golimumab equal with actemra? I really don't know how to get that biologics without permission from my country.

[dwsurquhart]

Hello Cate,

I am sorry to hear you cannot get the biologics in your country.

If you can, try contacting the manufacturers of the medications. They have ways to get it to you I believe.

My spleen was very enlargedat the outset of AOSD and my knees are a disaster now. None of the conventional medications worked for me either. Prednisone did work for a little while in bringing my inflammation down. Just did not work well enough.

What country do you live in? Is there a way you could travel to another country to access the medication you need?

Scott

[Hidden in reply to dwsurquhart]

Hi Scott. I'm so sorry to hear about your knees are still disaster for you. Hope you get well soon.

So Actemra still didn't bring you have remission? Where do you live? How much actemra in your country?

I live in Indonesia. I read on many forums said biologics are expensive medicines for patients. Doctors in Indonesia highly recommended on conventional medicines. They avoid biologics for their patients as biologics are uncommon medication in Indonesia, they worried about the side effects as they don't know well about it, the price is so expensive here and the insurances don't wanna cover it. Therefore when their patients are unresponsive with conventional medicines, they choose to give up and suggest the patients to look for the best treatment outside for theirselves. So unlucky me having very rare AOSD and RA with condition unresponsive to conventional medicines and live in Indonesia.

I've contacted the company of biologics. But I don't know they can help me or not if their company isn't in Indonesia.

I cannot travel to other countries as my condition. I have spiking fever, extreme fatigue and numbness, pink rashes go wild when I go outside of home although only go a few of kilometres.

Thank you so much, Scott.

Cate

[dwsurquhart]

Golimumab works much the same as Tocilizumab. Do you have access to that? I have not had that medication but know a couple on it.

Golimumab is also known as Simponi. It is an anti-tnf drug. Works on the tumour necrosis factor in your body.

If you can get it, try it. Would be worth it to get you some relief.

Scott

[Hidden in reply to dwsurquhart]

Hi Scott. I knew golimumab from my rheumatologist. But he didn't give me as my condition. I have abnormal liver function, having recurrent urinary tract infection and pelvic inflammatory disease, severe abdominal pain. I also have unresponsive with many medicines. They make me having other diseases. I read on articles that simponi cannot give to patients with perforation on stomach or intestines, having infections, nausea, vomiting, abnormal liver function. I think most drugs for us are not recommended for patients with abnormal liver function.

Anti TNF-alpha drugs can develop cancer. There were 3 women reported having AOSD treated with anti TNF-alpha drugs and 10 years later, they had cancer and all of them passed away. You can searched about it.

Cate

[Hidden in reply to dwsurquhart]

Do you take vitamins or supplements? If you do, what kind of vitamins or supplements do you take?

I take fish oil, D3, B complex, wurenchun (chinese herbal medicine for my liver), EPO, vit. C and E. I have imbalance esthrogen hormone that caused me having tumor and cysts from 2009-2013 and I have been free of cysts since 2014. Free from tumor and cysts don't mean I'm free from the medication. I have to take the medication regularly. And now I have AOSD and RA. I have AOSD since my childhood but I found the correct name of my disease last month. I had to change many doctors with their wrong diagnosing that caused me had to take wrong medications. So horrible for me.

Cate

[Hope7777 in reply to Hidden]

Hello Cate, My sister have AOSD and RA i was with her every minute and i know how awful this disease is i really cried when i read ur message i can imagine the pain you are in , please dear try to take actemra, i'm sure they can send it for free to you if they see you are in need for it, please tell me if you are okay.

[Hidden in reply to Hope7777]

Hi Hope7777. Thank you so much for the information. I'm sorry about your sister. How is she now? Hopefully she's always very well.

Would you tell me about the symptoms of your sister's RA and AOSD? How long did she get actemra until her condition got better?

Unfortunately I still haven't tried actemra. This drug is very expensive in Indonesia and my doctor is not sure to give it to me because of my body condition which always has negative effects on many drugs.

Today my other doctor recommended Purtier. It's a food supplement. He said his patients with arthritis and prostate cancer got better conditions with this food supplement. Have your sister or someone around you tried it? Thank you so much

[Hope7777 in reply to Hidden]

Oh noo. I see u mentioned in the past that you can not take sterois meds.. the actemra might help in your case. But tell me how bad is your pain im trying to know what level is the strength of your disease and how long you had it and did it affect any parts of your body?

[Hope7777]

Hello dear sorry for late reply.. my sister on actemra for almost 6 months now.. she had joint pain she could not move them.. and then she had spike of fever for so long non like 1-2 days..before that she also had swollen feet and hands iy change sometimes on right side sometimes on left.. she had throat pain too..when doctors did not know whats wrong exactly.. they didnt give her the right meds.. so she developed inflammation and fluid around her lungs and could not breath.. but now its much better..and also she is on other meds like methodrexate and prednisone also vitamin D those meds helped her stop the pain.. they did not help in your case? Did you try them?.. you need to get cure soon as possible.. if they will not give you actemra i can help you write a letter to the company who make it.. i read somewhere they can help without getting payed.