Catching up

[Tiff]

Hi all,
Keep wanting to drop a note but think I’ll wait for more details before posting. But now it is really time. I’ll keep it really brief. 😆

Some of you may recall, I’ve been on a huge cocktail of meds the past year. It has gotten me back on my feet, and I have been doing really well. After 3 years of trying only AP/MP, I broke down and added Orencia (w/ MTX). I ended up on prednisone before the other meds kicked in, but after a few months I was down to 4mg pred and doing great – working, traveling, etc.

In November my Mino script ran out. The rheumy told me I’d have to have the derm prescribe that. 😡 The derm wanted me to get off that (is was working for my skin, but not all that well, and it was impossible to tell how it was affecting my RA). He took me off it and gave me Accutane hoping to clear up the last, lingering skin issues on my chin.

Well, long story short. I ended up with severe pain in my left ribs, x-ray negative for pleurisy. Over a couple of weeks, it sank into the very bottom of my rib cage and began to be accompanied by GI distress, mostly bloating, sluggishness, but unlike me. Over Christmas I got very distressed and went off the Accutane.

When I saw the doc after the holidays, he said my blood work was now showing a positive ANA. 😯 This got his attention because I came in saying, “Think this is giving me another AI issue!” Well, he was very perplexed because one does not get Lupus by going off Mino – in his mind. 😕

We put everything back in place as it was before. Quickly I got better again, and I am doing well once more. My ANA returned to normal. 😎 The pain went away very quickly. My current labs are all normal except the blasted CCP which is 126. It was >250 last I had it done. My RF is just barely tipped over the normal (37 when 35 is normal). He takes 3 kinds, and the other 2 kinds are normal. It was up to 84 at its highest point. I am pretty much completely pain free. I occasionally have some “tender spots” that feel like bruises when I push on them (stop pushing on them, right?), but nothing that sticks around.

So, now my doc is listening to me about the Mino, and I don’t think he is going to mess with that anymore. 😀 Unfortunately we can’t be sure if it was the Accutane or the drop of the Mino that caused the pain and blood changes. Interestingly, I think Accutane gets blamed for many things, and it very well may have caused this, but it is interesting to remember that there are plenty of people seeing derms who end up on that drug who have just dropped Mino, too. So… who knows what is going on, right?

I know being on the immune suppressors isn’t popular around here, but it is what it is, and I did want to let people on here know that not only am I on both (AP and biologics) – I am doing pretty well on both too. Just more information to throw out there that may help us figure this out one day!

And it is nice to see some familiar faces! You all are always in my thoughts.

[Maz]

Tiff, so great to hear from you. I often have wondered how you were doing and was hoping the Orencia infusions were helping. There are all kinds of class action suits going on with Accutane now…my daughter was also on it and I have wondered if had caused an IBS situation with her – she can no longer tolerate certain foods which have an immediate effect on her. One class action suit I’d seen on TV was for anyone on Accutane who had developed any gut issues, including crohn’s colitis, which is, of course, an AI disease.

Well, sure do hope the new combo of Orencia and mino continue to bring you normalcy and great quality of life – sure does sound like it! YAY! 🙂 Thanks for coming back to share your latest.

[Tiff]

I have seen the Accutane issues, so I was aware of that. What annoys me is that when I went in, complaining of pain in my side, both doctors didn’t think – colitis! Ack. Yes, I said ribs, but left side pain is associated with colitis, and the flag should have gone up for them. But, no, I had to research it and take myself off of it. What do we pay them for again? There are an awful lot of people who do not get those issues with this drug, though, so there must be some kind of predisposition that is in play here. Clearly I am predisposed having had two AI diseases diagnosed (duh). Why neither the derm nor the rheumy thought that might be a concern is beyond me. The only thing they considered was a drug interaction between the Accutane and the meds I was on. That should not be their only concern. But a Lupus-like result is still mysterious all around.

The same thing happened to my mother a few years ago regarding meds. They gave her Chantix when she has bipolar disorder. They did not see a problem with that? A drug known to cause mood issues, they gave that to a bipolar person? Well, she had a complete psychotic break due to lack of sleep for 3 months. She is completely recovered again.

The good result here though, for me, is that I have documentation that taking me off the Mino is very risky. I plan to get that in writing so that when I have to change doctors they will not have to take my word for it because they won’t take my word for it. I went along with this fiasco only because I knew that it was inevitable. They were going to make me drop the Mino someday. I may have to again for some reason, but it won’t be just on a whim.

Here is still hoping and wishing and praying for more research into Mino’s influence on these diseases!

[Rockin Annie]

Hi Tiff,

Your post was very interesting to read. I too have started MTX which was very hard for me, as I vowed I would never go back too conventional meds. After having so much erosion to my neck, spine and going in for major surgery (May) I realised some conventional meds are necessary! I really don’t know why my thinking was so off beat, but I now know that I need a mixture of both AP and Mtx to get me back to normal. We are all different and we do need to listen to our own bodies and pick each others brains as well. We also need to read and learn as much as we can, don’t you think!

I too had lots of probs when on Biologics with my chest (infections) but I think the combo of AP and other will be the key now (hopefully).

Hope you keep well and stay well………Annie

Diagnosed with RA in 2004, after trying many conventional meds I changed to mino.
2015 changed to doxy 50mgs
2016 went off doxy, after getting double pneumonia and massive flare put myself on 250 mgs Zith & 50 mgs doxy, which I will increase slowly.
Supps, magnesium, NAC, vit c, krill oil, oregano oil, thisylin, turmeric, olive leaf extract, vit B, multi vit.

[Tiff]

Oh bless your heart, Annie, it is so frustrating! We do have to keep an open mind and keep studying it all.

It is a terribly hard decision. For me, I knew that I was going to start sustaining permanent damage if I kept doing what I was doing. I could feel it. Finding doctors to work with me was not working either. They just kept saying take less ABX or take more Benicar, but I knew myself well enough to know that that was not the answer. I tried a couple ABX combos, and I do wonder if IVs or other combos would have worked, but I could not access that route. I was getting sicker every day with not a single factor to make me think it was working. Five years into this, I have no permanent damage to show and am functioning, so take that how you like. I don’t think anyone has a guarantee going.

The Orencia is not a TNF blocker, so it is a bit different. They have not had as much trouble with infections for that drug, but that is always their worry. I have had two colds, but nothing any worse than my family members. The rib issue may have been pleurisy, but I have no idea. I think the Mino affords some protection against infections whether they want to admit it or not. The establishment considers ABX a resource not to be squandered on long term use (I was listening to a doctor talk about it on NPR, and he clearly thought that they needed to be guarded against “misuse” as defined by whom, I don’t know.), so that is at the root of their issue with AP, in my opinion. But our long term use is not the same as frequent unnecessary use. That is probably a bigger problem. Some of the articles posted here look like maybe there will be a breakthrough in how this is perceived. I sure hope so!

I hope you get some relief, Annie, you deserve it!

[Rockin Annie]

Hi Tiff,

You are one lucky lady, no permanant bone damage as yet, that is great, maybe the combo of Orencia and Abx is doing the trick. I didn’t know that Orencia is not a TNF blocker and is diffferent from the other Biologics. I too had very bad infections with Humira and did go onto Orencia, but it didn’t seem to help me at all. I also have been on lots of combo’s but am going back to Mino alone to see what happens with that. I really haven’t had a relief from pain until I went back on the Mtx last Nov and feel great apart from my neck, which soon will be a thing of the past after my op.

…………..Annie

Diagnosed with RA in 2004, after trying many conventional meds I changed to mino.
2015 changed to doxy 50mgs
2016 went off doxy, after getting double pneumonia and massive flare put myself on 250 mgs Zith & 50 mgs doxy, which I will increase slowly.
Supps, magnesium, NAC, vit c, krill oil, oregano oil, thisylin, turmeric, olive leaf extract, vit B, multi vit.

[Tiff]

I hope your surgery goes well! You know, looking at your meds, you are on a lot less than I am, so that’s a good thing for you. I hate needing so much, but not quite as much as I hate being bed ridden. 😆

Best wishes! Drop me a note anytime if you want to share thoughts!

[Rockin Annie]

Thanks Tiff,………..will let you know how it all goes………..and keep yourself well also……….Annie

Diagnosed with RA in 2004, after trying many conventional meds I changed to mino.
2015 changed to doxy 50mgs
2016 went off doxy, after getting double pneumonia and massive flare put myself on 250 mgs Zith & 50 mgs doxy, which I will increase slowly.
Supps, magnesium, NAC, vit c, krill oil, oregano oil, thisylin, turmeric, olive leaf extract, vit B, multi vit.

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