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squirmingitch

What do you know about rheumatoid arthritis & the prescription meds for it?

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I am pretty sure I have RA. I have so many symptoms. It's really sort of jumped on me in the last 2 or 3 months to where almost every single day I have 1 to multiple body parts affected. It seemed to come after getting cross contaminated several months ago & the cc symptoms subsided but this body wide inflammation is not getting any better. I have a primary care appt. on Monday & will tell him about it. I am sure he will order tests to confirm. I'm looking for feedback mostly on experience with the different meds they prescribe to treat it. Do you or a family member or friend have experience with RA?

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An update.

I am newly dx’d with RA.
This dx has gone pretty quickly for me. I pretty much figured out I had RA when I googled my symptoms & then I went to my PCP & described my symptoms to him. He ran serum. Ha! It’s kinda funny b/c I am sero negative on celiac (the rash is the key there) but I’m sure not sero negative on RA. My RA Factor is 132 with a ref. range of <14. CCP is >250 with ref. range being >59 as strong positive. ANA Screen is positive with ref. range as negative – you’re either positive or negative on that. ANA Pattern is speckled. ANA Titer is 1:40 which is high. After these results, my doc ordered some more labs. He wants to rule out Lupus & Mixed Connective Tissue Disease (MCTD). We are still waiting for the results on those.

My doc also had me tested for TB in anticipation of putting me on meds for the RA where you have to make sure you don’t have TB before starting. He also ordered some X-Rays of my wrists, hands & knees. The good news is that we caught this early, very early from what I am reading from my research thus far. It seems only my left hand has permanent damage & that damage is very mild & basically confined to 1 joint on my middle finger. So all in all, at this point, I feel pretty lucky.
Doc has prescribed 7.5 mg methotrexate orally once a week & 1 mg. folic acid daily. I have not started it yet as I have to send the script off & the meds get mailed to me so I am just waiting for them to arrive. I was totally freaked at 1st b/c the methotrexate is a chemo drug. YIKES!!! I’ve had a bit of time now to do further research into it as well as just let it sink in mentally. I certainly don’t need permanent damage & no one needs pain right? I’m going to have to give the RX a go. As it is, I’ve been living off of Advil to the tune of an average of 9 per day & still I have times of pain. It isn’t unbearable yet though & I’d love to keep it that way if possible. Doc did not go with prednisone b/c I am so small & can’t afford any bone loss. Suits me fine, b/c I have had steroids before in my life & I hate them! They make me bounce off the walls.

The bottom of my feet are the worst I think. They feel swollen & painful every single morning. This has been going on for about 6 months now. It was intermittent in the beginning but for 3 or 4 months now, it’s every single morning. I think what really rang the bells for me was in August, I had what I now know was a flare. I felt like the rusty tin man who was in terrible need of some Liquid Wrench. That was body wide & lasted around 6 weeks. It was painful & frustrating as hell.

I also have been dx’d with Reynaud’s.

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Oh SquirmingItch, I am so sorry.  More AI issues!  Ugh!   😥

I do not know much about RA.  My own grandmother had it though.  It is a good thing you live in a sunny climate since you have Raynauds.  Wool socks and gloves are a must.  Icy A/C canntrigger it too.  

I hope your pain is better managed with the RX.  

Hugs!!!!!!

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Thanks cyclinglady! Yep, well, we know those old AI diseases like to cluster. I was pretty much bound to end up with something else. It can take up to 12 weeks for the RX to manage the disease but like I said, I am extremely lucky I caught this early so the debilitating effects can be mitigated. There are so many more options now than when your grandmother was alive. 

I've actually had the Reynaud's for years & years. A couple years pre celiac dx for sure. I just didn't know it was Reynaud's. It only presented when I went to the grocery store -- you know how cold they keep those places! Thing is, when celiac came into the equation & I went gluten free, the Reynaud's disappeared completely. Presto magico! Gone without a trace! It only recently resurfaced & yes, I mostly only get it when I go to the grocery store. I'm thinking I need to get a pair of those gloves that have the battery operated warmers in them. I just loathe the thought of getting gloves nasty with foodstuffs from the grocery store. Here I'm imagining raw meat juice & such. Ick! Maybe I'll take them off through the meat department. :lol:

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I don't have RA but I do have Psoriatic Arthritis which is pretty much the same but I also get the added bonus of psoriasis:). I was able to get off my medications by following a pretty strict diet. It's frustrating to figure out and currently am slipping so I have really sore ankles, tight wrists and a thumb I can't bend right now but I can get on track easily enough now. Just waiting for New Year's to be over then back to no dairy, oranges, nightshades (especially tomatoes),  or sugar, eat lower carb, and probably do intermittent fasting.  I am always gluten free, as I find that is the one thing that flares up my skin instantly. I mostly avoid all foods that are inflammatory related so I might be missing a few that I said I will be eliminating. 

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Thanks for the feedback janpell. I don't do any processed food, no gluten of course, no grains of any kind, no nuts, only fresh fruits & veggies & meats -- not frozen, no cured meats. Right now, about the only fruit I can eat are peeled apples. I do drink milk & use sugar in iced tea & coffee. I am loath to cut milk as I need the calcium. 

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Sorry to hear you have another tie-in for your user name Squirmy!  :(

It sounds like your diet is really pretty healthy.  But I wonder if it would be worthwhile to trial eliminate some things anyway?  Like dairy for a few months, nightshades for a few months, caffeine for a month, soy forever.  Just to be sure there is no relation to the symptoms.

It would be nice if there is a food cause and you can get rid if it.

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Thanks Gee-eeF, I haven't had any soy in years & I have done trial elimination of nightshades. So that leaves me with caffeine, dairy & sugar.

With my serum results, there's no doubt it's RA & as much as I would like to think it can be controlled with diet; that's a fool's errand. You don't screw around with RA. The 1st 2 years are ultra important. There is no reversing or recovery from the permanent damage RA does & that damage is done F-A-S-T. The pain & discomfort can be modified (sometimes) with diet & NSAID's & stuff but not the damage. That's why you really need to use DMARD's.

Disease-modifying anti-rheumatic drugs (DMARDs) are effective at reducing inflammation associated with rheumatoid arthritis (RA) and slowing or preventing damage to joints. This enables a person with RA to maintain function and quality of life. These drugs are called “disease-modifying” because they can interrupt the processes that cause damage in rheumatic diseases. The introduction of DMARDs for the treatment of RA significantly changed and improved the prospects for patients with RA. Before the availability of drugs like methotrexate, damage to joints and related structures from chronic inflammation associated with RA was inevitable for many patients.

 

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Those DMARD drugs sound like a great thing Squirmy.  I'd sure be taking them also if I had RA.  I wonder if they work for thinning hair? :)

Well, if it's not something you are eating, maybe it's something you aren't getting enuff of?  Had any WD-40 lately? :)

I am sure there are lots of so called "cures" out there for RA, but I have no idea which of the "cures" would actually help.  Maybe someone will come along with some helpful suggestions though.  A nice cup of hot tea helps a lot of things though.

I hope you feel better soon and have a great and Happy New Year!

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Hi squirmingitch, it has been a long time since I posted here or even read here but today for some reason this was in my email and I read your post and thought you sounded a bit like me.  Back in 1999-2003 my body started dying and getting just about every autoimmune syptom that one could possible have.  Back then Celiac Disease was not on any doctors radar so millions of MRI's, Cat scans, Bone scans, Autoimmune tests, heart...eventually I was dx with Axonal Neuropathy then Myasthenia Gravis.  I refused medication as I read how awful the side effects were and also noticed the meds only relieved the symptoms for a little while.  So, I kept reading especially about vitamins.  Meanwhile my heart and neuropathy symtoms were increasing and eventually lead to a couple small strokes.  Friends on an old website called Braintalk told be to get checked for Celiac.  Reading up on it I realized I should be tested because of 2 brothers with type one diabetes.  I asked my family doctor to test in 2005 and she said I was looking for a disease and needed to go on Prozac and gain 15 pounds!  With the 2 brothers she had to test me although she never heard of that relationship.  Later she wrote me a note said I didn't have Celiac and come back in with a bit of an apology.  A few weeks later I stopped in to get my test results and when I got home and read them the Gliadin IGA was very positive!!

So tests from Gastro confirmed very Celiac and diet started and I was like most...eating gluten free but not really better.  Then had an attack and was dx with DH also.  Eventually quit eating all the gluten-free processed foods which back then were still full of gluten, eliminated dairy, most sugar and soy.  Then I started eating organic everything...this helped....Then I decided to try magnesium (epsom salt) in bath even though it was a problem with MG (myathenia Gravis)  at first I felt weaker but suddenly after a few times I started feeling a little better.  Then I found some Liquid Mag called Remag and started putting that in my water...this really started to change how I felt.  As I read more, I found out that mag is more important than calcium and is as important as vitamin D and Vitamin B12.  Now my face and right eye rarely ever droop and I consider my self cured of MG...as with Celiac I am still testing positive even though my house is 100% gluten free and rarely eat out....I think I had this disease since about 2 years old.  But, I feel great and have tons of energy and am now working with a functional doctor at the Cleveland Clinic!

I was tested for heavy metals and was extremely high in Lead and Mercury and other metals...this is a test all patients with autoimmune problems should get...and it needs to be the one where you take a pill that pulls the metals from your tissues...it is a Urine test Doctor's Data was the first 2 and I think the last was Genova Nutreval

When I was so sick, I just wanted a pill to fix everything but with all my research (since 1999 when I first had low white count and platelets) I realized that pharmacutical medicine is not always the best choice and needed to learn why am you sick....what is causing my body to decline...what vitamins am I missing or taking but not absorbing...what foods taste so good but may be causing the problems of truly getting healthy.

Take the time to read Dr. Hyman who started posting way back in the beginning of my illness...he had similar issues and eventually was asked to create the first Functional Clinic at the Cleveland Clinic.  I have only been there once but have another appt soon to follow up.  All my tests showed some very intersting deficiencies even with my many vitamins I take.

I understand when you are in pain and need the help of meds but please try to find a way naturally to avoid them in the future...try eliminating dairy as the more you read, it is one of the biggest inflammation causers of all foods besides gluten.

Good Luck to you and all that read, as research is the best answer to health problems.  Also, my daughter was Dx with Graves disease 2007 and of course the answer is remove it or nuc it...whe did meds for one year and gluten free diet and she is cured...no meds only gluten free dairy free soy free sugr free and tries to eat all organic.  It is amazing what a good diet can do to help your body recover!!

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Hi Squirmy,

Just wondering how you are doing on the DMARDs?  I've been having some hip pain lately and doing some research on it.  My sister sent me this link about Boron in the diet and joint pain.  I thought you might be interested in checking it out.

https://draxe.com/boron-uses/?fbclid=IwAR3FAP6gb-xAEERFV8ADW-9Lwo7XmWiRgTT_Ydx2B6CWDQuR8XJfWN3h0vI

All the best GFinDC

Edited by GFinDC

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Squirmingitch,

This thread might help you it talks about some things that have helped other users with bone issues.

I would also check out the SAM-e supplement and Turmeric.

Here is couple of threads/links about them.

https://www.arthritis.org/living-with-arthritis/treatments/natural/supplements-herbs/guide/sam-e.php

https://www.organicfacts.net/health-benefits/herbs-and-spices/turmeric.html

I hope this is helpful but it is not medical advice.

Posterboy,

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Hey Squirmy,

      I don't have much time to write in detail but take a look at this:  https://www.amymyersmd.com/2017/05/low-dose-naltrexone/

It is an off label treatment of an FDA approved drug, but many people have had good results.  I started using it about 2 months ago because the hives thing was starting to drive me crazy. My thyroid was also acting up, which it had not done so in many years.  The results have not been profound as of yet but my T3 levels have improved without dosing higher on the thyroid meds and the hives are nowhere near as bad as they were months ago.  It can take a while before improvement happens or it can happen right away......everyone is different.  But RA meds suppress your immune system and I don't think that can be good when you are older.  I have had zero side effects from LDN, except I dream more vividly, which is common.  Not nightmares, but technicolor dreams.  LOL!   It is not expensive, either.  You have to find a doc who will prescribe it because the mainstream crowd generally like to use the more powerful Rx meds in their arsenal.  But, like you, that didn't appeal to me.  Too many side effects.

http://www.lowdosenaltrexone.org/index.htm#Cautionary_warnings

 

Just something else to consider.........😊

 

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Oh dear! I didn't see Gem had posted -- I never got a notification. Nor did I get a notification for your post GFinDC. That's really weird that I should have to "watch" my own thread.  OK so whatever, I'm watching my own thread now. LOL!

Thanks Gemini! Actually my best friend & her hubby take (or took) LDN for umpteen years. I'm not sure if they are still taking it or not. Probably not, since they both now have multiple, serious, health issues. I'm going to ask her about it again though. Plus I will research it again.

Thank you so much GFinDC! I adore cherries but right now cherries don't like me. None of the pitted fruits want to be kind to me these days & it makes me sad b/c I am so in love with them. Just one of those added food intolerances we tend to get. I'm counting on it being a temporary situation.


 

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Oh Oh, no cherry on top then? :)

I hope it is a temporary intolerance also Squirmy.  But all is not lost!  It seems anthocycanins are in multiple foods.  Mostly ones with a reddish tint.  I'll link a couple articles.  One lists some other food sources besides cherries.  The other details a study showing that some supplements are mislabeled or deficient in the anthocyanins they purport to contain.  The study concludes that food sources are more reliable right now.  What I found interesting about the 2nd article is they say anthocyanin content testing has been used to verify fruit juice contents for some time now.

https://www.verywellhealth.com/the-scoop-on-anthocyanins-89522

https://www.sciencedirect.com/science/article/pii/S2352364616300116

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