Two questions: this group, and treatment option

[Best_me]

I join this group on behalf of my husband. He primarily has Sjogren’s syndrome, but also has some level of RA. Recently, his complaints seem to be more of an RA origin.

My first question is whether I should be in this particular group. This group seems focused on the UK, and I am in the USA. Is this group still appropriate, for me?

The second question is about treatment options, for my husband. Because he has macular degeneration, and a heart valve replacement, some of the standard Sjogren’s and RA treatments are not available to him. I stumbled on this article (ncbi.nlm.nih.gov/pmc/articl... how about antibiotics as a treatment for RA, and I wondered if that is still a viable alternative, and if there’s anyone in this group who is using antibiotics as their treatment.

thank you for any feedback

[Karen12]

Hi Best_me, we have lots of people from the US on this site as well as people who have registered for their partners. People are always welcome.

I unfortunately could not access the article you linked but I wonder if you are talking about Sulfasalazine? Sulfasalazine is a common RA medication (in the UK anyway) and is a combination of an antibiotic and Mesalazine.

[Sheila_G]

Welcome. As far as I am concerned you are welcome whereever you are from and whoever you are enquiring for. RA is the same all over the world but different countries may use different drugs. The symptoms and the problems will be the same so we can certainly help in that way. I hope your husband finds the best treatment for him. Please post again.

[CJ46]

Hi there and welcome to the group. I’ve always found that being on antibiotics, usually for something unrelated to my RA, has always helped the RA massively, the same with being on steroids, but unfortunately although it works for the pain it doesn’t stop the progression of the RA disease. Best wishes to you and your husband on doing battle with this disease x

[SLCR]

I live in US and joined this group when my doctor thought I had PMR. I’ve learned a lot about medication and many other issues. My diagnosis was changed to Sjorgens and non erosive RA. I still get most of my information here in this group. I’m still on prednisone, trying to taper down as other medication takes effect. Currently I’m on plaquenil 400 mg daily, I’m at 9 weeks and I think I’m starting to improve. I’ll get the eye exam at the 3 month point, but don’t have any current eye issues. I started methotrexate but at 8 weeks had to stop due to GI issues. Then tried Arava, stopped that too, GI issues. I am currently waiting to hear from my doctor, I asked him to just leave me on plaquenil and let me try to taper the prednisone and see if just plaquenil works. I think since I don’t have the marker for the erosive RA I don’t initially qualify for some of the biologics. My symptoms of Sjorgens, dry mouth and dry eyes, I’ve had for years with no diagnosis, but a year ago I started having shoulder and neck pain with stiffness and it took a while to finally come up with Sjorgens and possibly RA, “overlapping” autoimmune issues. My opinion, they really don’t know, they just start throwing meds at you to see what works. I have to speak up for myself and bargain with them. I still think I have PMR and Sjorgens, I think the RHEUMATOID factor is due to the Sjorgens. I’m trying to stay positive and informed and this group helps! Good Luck. Stephanie

[Swanfull in reply to SLCR]

Hi I suffer with Sjorgens very dry mouth, & dry eyes, also have RA. Just wondering what you take for the dry mouth as it drives me crazy at times?

[SLCR in reply to Swanfull]

I have to say the only thing that helps me is water always in my hand, just sips. I’ve never found a product that truly helps. My doctor offered some medication but I’m just sick of medication so I declined.

[Swanfull in reply to SLCR]

Thank you! Yes sip water all the time 👍constantly in my hand 😊

[SLCR in reply to Swanfull]

I know it’s a pain to always sip water. My doctor and dentist tell me that with my dry mouth I should have cavities and other dental issues, but I don’t because I work hard to protect my teeth. I also think the new addition of plaquenil might be helping me.

[Swanfull in reply to SLCR]

Hi could you tell me what plaquenil is?

[SLCR in reply to Swanfull]

It’s a medication used for some autoimmune issues, also known as hydroxychloroquine. I’ve been taking it 2 months and I’m starting to notice an improvement in my Sjorgens symptoms.

[Swanfull in reply to SLCR]

Thank you.

[cyberbarn]

As the previous poster has mentioned, sulfasalazine is an antibiotic and it does help for some people. But there are two parts to sulfasalazine; one part is the antibiotic, but the second part acts to reduce the process driving inflammation as well as helping to control the overactive immune system.

We have to be careful though when reading peer reviewed papers. For example the paper you have linked to says it is *possible* that a pathogen is causing RA. So IF a pathogen is causing RA then it is possible that an antibiotic might help. It doesn't say that RA IS caused by a pathogen. In fact it is likely that RA and all similar autoimmune conditions are caused by a combination of things.

The language is important in peer reviewed papers.

Another difficulty with papers like this is that many of the papers it is citing as evidence is more than 10 years old so may be out of date. Additionally a lot of it is association, for example patients with RA also have a particular bacteria present. That is just an association, that doesn't mean one thing has caused the other. In fact it could be that both are caused by something else. Also there is a lot of self-citation going on with that author, who never appears to collaborate with other researchers. That is the sort of thing that can ring alarm bells and which calls for a wider search of publications.

Also worth remembering that antibiotics aren't benign drugs without side effects, for instance Levofloxacin has been implicated in tendon damage and there is the ongoing problem of overuse of antibiotics leading to antibiotic resistance.

So yes, some antibiotics are used in the treatment of rheumatological conditions, but they might not be the right treatment for all people or for all conditions.

[Best_me in reply to cyberbarn]

Thanks, and thanks Karen12 and sorry for the delayed response. I did notice the age of that article and that’s why I wondered if antibiotics were a current treatment, ever. My husband’s going to have limited medication choices. Maybe this is also NOT one of them!