Hoping for better meds

[Nellies47]

This disease affects us holistically definitely. I'm diagnosis autoimmune inflammatory arthritis since May 21. Also have primary billary cholangitis since Dec 20. Fatigue , joint and muscle pain and my main symptoms. Also dry eyes mouth ear and jaw pain occasionally. I'm on plaquenil for 6mths with no improvement and had a month of steroids in dec which helped but caused gastritis and worsening restless legs. At moment I'm in alot of pain in fingers, hands, wrists, elbows and feet, ankles and knees. Fatigue is a lot worse in the last week.

I have found reading your posts, especially from those with years of experience very useful. It has helped me realise that there will be help ... there's lots of meds out there and that I have to be patient.....it seams it can take some people years to get on the right meds. This had been scary and comforting , cause I know I'm not alone.

I'm seeing my rheumatologist again on Tuesday so please God she will give me something to regain some of my life. I'm slowly getting to grips with the knowledge that there will be a new normal for me. I use to run , can bearly walk any distance at the moment and I'm a public health nurse, I've been off work since Nov with this.

Thank you to you all for your posts...I know don't post often but I do read them and your all helping me. 💐❤

[Gnarli]

Of course I don't really like your health issues and the awfulness of your situation. I just want to express sympathy and acknowledge your difficulties. Fingers crossed for a productive appointment on Tuesday

[Nellies47 in reply to Gnarli]

Hi thank you very much.

[Marionfromhappydays]

I've found the having to be patient part really difficult, sorry to read you aren't getting much relief from your current medication.

You've given it a good bash for 6 months sounds like a change is definitely needed. I really hope your appointment on Tuesday provides a new plan of action to get your arthritis under control.

I'm a big believer in the squeaky wheel gets the oil so I always voice my problems with my rheumatologist amd ask what can be done (they've probably put a photo of me on the wall and throw darts at it 😅) .

Your medicine is out there and hopefully you'll find it ASAP x

[Nellies47 in reply to Marionfromhappydays]

Thank you for reply. Its been difficult to get appointments with rh, then she got covid the poor lady.So here's hoping Tuesday will be fruitful.

I have a list of symptoms and questions, it will be a long consultation 🥴...prob darts for me too.😄

[Hidden]

Hi. It is tough; especially for us fiercely independent types who don’t have patience as a virtue 😇. For me one of the toughest challenges was attempting to rewire my brain 😵‍💫.

It took 2 years for me before all the meds started working and another 2 to get back on my feet. It is ‘the long game’ you are playing now. Your body needs rest and less stress to do better. Day at a time. I went from strolling up mountains, to struggling to get to the top of the road. Life can be harsh. Try not to be too hard on yourself. Gently gently x

[Nellies47 in reply to Hidden]

Thank you so much , yes I'm not use to being unable to do things I use to and re wiring my brain is the most challenging at the moment. I find a daily nap helps a bit.

[Hidden in reply to Nellies47]

Naps are the way to go x

[Nellies47 in reply to Hidden]

😍yes

[Hidden]

I'm not sure if this will help. But here goes. In 2014 I listened to the Rheumatologist say 3 simple words. "Inflammatory Rheumatoid Arthritis ". At that point I could barely type. Walking was difficult. And sitting was so hard on my hips I wanted to scream. I found myself on disability from work and in a wheelchair. Medications were the usual fare. Prednisone and Methotrexate. Methotrexate made me violently vomit. So, we began the biological. Some worked for a short time. Some not at all. The latest attempt at remission has been Rituxan infusions. I had such a violent reaction to that that the nurse was ready to call EMS.

NOW FOR THE GREAT NEWS. My Rheumatologist is also big on holistic augmentation. Sugar, gluten, and red meat are gone. Just those changes have worked miracles. I am on hydroxychloroquine, Duloxatine, and Mycophenolate. I have a pain doctor who has me on a Fentanyl patch. Since I'm not in remission, the destruction continues.

ALL THAT SAID; flairs happen. I is often difficult to get out of bed. Or even want to get out of bed. TAKE CHARGE OF YOURSELF. Make the effort. Change your lifestyle. I'm now over 65. Not in remission. BUT I can walk the dog for a mile. The wheelchair is gone. Sometimes I need a cane. Especially in the cold. Don't allow yourself to be coddled. Don't rely totally on medicine. I ended up on disability.

If you read all this, I hope it helps. In spite of the pain, appreciate the little victories. Your faith will also carry you.

Let me know how you're doing.

[Nellies47 in reply to Hidden]

Thank you so much. Really appreciate your help. I really hope your doing OK.

Thank you for the "Take Charge of yourself". I really don't like to be minded. your so right. I will try gluten and sugar free definitely. (I don't like red meat). How long were you off those foods before you noticed a difference.

God bless, Nelly

[Hidden in reply to Nellies47]

In about a month. It takes about 3 weeks to kick the sugar habit. Being gluten-free repairs the lining of the intestines. Since most of our immune system resides in the gut, the change is dramatic. You will know how well it has all worked if you fall off the wagon. Sugar fuels inflammation. Going back on sugar will cause you physical pain!!!! Allowing the gut to heal will bring inflammation down and allow the immune system to balance and temper the autoimmune attacks.

I'm not trying to be long winded. I just want to help. Pain is an awful companion. It impacts those around us as well. It requires a concerted effort not to take it out on those who want to help us.

Feel free to reach out any time. This is a journey that requires support from those who have had to walk the path.

[Nellies47 in reply to Hidden]

Thank you. Yes constant is draining and yes definitely affects everything and everyone.Did you stop all foods at once or gradually.

I'm looking at it on line.

[Hidden in reply to Nellies47]

I made the choice and did it. I spent too much time in pain. In a wheelchair. Sometimes on the bed in a fetal position and in tears because of pain. When the sugar connection was mentioned. I ran with it. It didn't take much research to show me that leaky gut was a very real problem not being addressed by the medical community as a whole. I was just blessed with a Rheumatologist who wanted to treat the whole person.

[Nellies47 in reply to Hidden]

Sounds like your rheumatologist is lovely, mine is nice but always feel rushed. I def doing the diet. Need to get my life back.

[Hidden in reply to Nellies47]

I'll help any way I can. Just reach out. I don't know much about you. I got hit with this when I was 56. I knocked me from a 6 figure income to the company disability plan. I was angry at life. I had to fix myself on many levels that medicine couldn't touch. My faith also played a major role. I actually took a 3 year sabbatical to attend Bible College. I had to rely on that foundation to help get me on my feet. My point is, helping yourself is the best medicine. Letting others help you is next best. Let God lead you. Medicine will fill in any blanks.

[Nellies47 in reply to Hidden]

Hi .So sorry you've been through so much.

I am angry at times and grieve for the life I had. Its been at least 2 yrs since I felt well.

Your right taking control is the answer.

I am a Christian and I have great faith. So fare God had been my best support ❤ 🙌 🙏.

Thanks again

[Hidden in reply to Nellies47]

Like Running brakes mentioned, foods that are called night shades cause inflammation. Those would be peppers. Google night shades. He mentioned potatoes. I learned about them the hard way. One of the best things I did early on was a blood test to find my food allergies. The results were devastating. Peanut butter, tomatoes, onions, pinto beans, pineapple, and a host of other good things. It's worth a try. Stop giving your immune system fuel to fight you.

[HJC321 in reply to Hidden]

You’re very determined to go both gluten-free and sugar free and I’m so pleased it has helped so much, so obviously worth it.Where is the best place to start when attempting to cut out both sugar and gluten? Does sugar-free include natural sugars such as is found in fruit?

Do you know of a book that helps/gives advice with both these? 😊

[Nellies47 in reply to HJC321]

Hi.I wish I knew and yes I'm determined cause I need to be pain free and get some of my life back.

I'm just going to take it day by day. I have googled it and it seams naturally occurring sugars are OK. I plan to read more . I'd say it will be a Learning as I go.

It is daunting to change my diet especially as I love chocolate 🍫 😋 but I have t try.

[runningbracken]

Diesels got it right Nellies. Its taking charge. I changed my diet totally. 2 months ago i was flaring a bit but it was stopping me living an active life running, mountain biking etc.Lots of people will tell you that there is no cure and you just have to find what works for you and live the best you can. All is true but you can help your yourself also by changing your diet, like Diesel and others say it really helps.

Am still getting little niggles but the swelling in my wrists and ankle are almost gone. Nothing to how i felt, energy is coming back am running and out on my bike. Was even up the mountains the other week in the bad weather.

Functional meds is something you might find interesting Nellies.

Potatoes tomatoes corn and soya products bell peppers all fried food, dairy sugar and red meat etc. Gone. Am still struggling to stop the coffee but it will come.

6 months i have to do it strictly for. Need to fix my gut.

Take control Nellies, good luck

[Nellies47 in reply to runningbracken]

Thanks for that. Am tucking in to gluten free porridge at moment 😋. Please God I'll have the strength to do this, I need my life back.

So grateful for support.

[Happy5]

Awww all hideous for you been there lots. My knees are being a total pain literally, can hardly walk grrr.Had RA diagnosis in 2012 was reasonably controlled till last 18 months, surgery, vaccines, and needing antibiotics has caused interruption and effectiveness reduced.

I often say RA is my training to learn patience which I didn't have much of when younger,

now no choice, so take it an hour at a time each day.

Hope things resolve asap.

[Nellies47 in reply to Happy5]

Thank you

[Neonkittie17]

Gentle hugs Nellies and hoping for a really good consultation for you on Tuesday. 🙏🏻💗

[Nellies47 in reply to Neonkittie17]

Thank you