Diagnosed with RA purplepanda

[purplepanda]

Hi. I want to say how happy I am to be a member. I’ve been reading the board and have read the Scammel book. I’ve written 2 previous messages and lost them. One said I had to log in to send it… When I did, I couldn’t get back to my message… I’m just going to add to this message.

I am sero-positive for RA, along with positive inflammatory markers and elevated sedimentation rate. The rheumy said I have aggressive RA, based on seeing me in Jan. & Feb. to discuss blood work. Three months ago in the early winter, I tore a ligament in my wrist dealing with all of the snow — was put in a brace & later a cast. A few weeks later, my right knee started to hurt & swell for no real traumatic injury. I went to the orthopedist who recommended physical therapy. For the month+ I’ve been going to PT, there is no real improvement. I then hurt my thumb joint on the other hand and was referred to a rheumy.

At this writing, my left knee is half way to the sorry state of my other one — swollen, hot, stiff, wobbly in a side-to-side motion, etc. I’m just taking one ibuprofen in the morning and one in the afternoon. Just in the last few days, my wrists & fingers are also stiff, swollen, & have next to no gripping strength.

I can’t even lift the foil lid on yogurt (have to slit it with knife first). I’m coming up stairs on my feet and elbows sometimes. I am progressively getting worse at a fast pace with more and more joints involved. The rheumy would not prescribe mino, but offered mtx, as I assumed, but I had to ask. She said she hadn’t used mino in 10 years. When I told her I didn’t want to take drugs with such serious side effects, she later offered Plaqinel or sulfa…????? I left it that maybe I’d call her after I did more reading.

The ibuprofen does not address the swelling or stiffness. My better time of day for getting around is 1 – 4:30 p.m. I don’t like taking drugs and stayed out of the healthcare system as long as I could before Hashimoto’s came into my life. I’m taking Armour Thyroid and had good thyroid levels & was feeling quite good until RA reared its ugly head.

I also removed 5-6 embedded ticks over the last year and a half. I had a traditional Lyme test in 2013 or 2014, which came back negative. The last tick I removed was Oct. 2014. I was convinced that the tick had to be attached for 24 hrs so I didn’t get tested then as the tick was in a place I would have noticed. I did ask the rheumy in Jan. to order a Lyme test, but she did not.

Sorry I’m jumping around here. I’m not that familiar with this tablet, and things keep moving around on me. I want to send this before I lose the message.

I have to do something fast because it’s more difficult to function. Thank goodness I’m retired. I’m not a wimp as far as pain goes, but I’d like to do something about the swelling and stiffness with a safe drug with few side effects before the AP would kick in. I walk like a toddler with a full diaper. I’d like to start AP, but have only seen my PCP 3 times & don’t have a long-standing relationship with her.

Any ideas? Thank you…

11-20-15: Off Mobic. No NSAIDS.
10-14-15: Working toward Minocycline 100mg BID. Able to "lock" my knees when standing now!
9-14-15: 2nd Clindamycin IV series. Still on 5mg Prednisone & 7.5 mg Mobic per day. Swelling greatly reduced in knees.
8-15-15: Started Minocycline 100mg BID MWF to present.
5-25-15: Started generic Minocycline, 100mg MWF. Tried titrating to 100mg BID MWF over a month & went back down to 100mg MWF.
5-18-15: 1st Clindamycin IV series. Dropped Naproxen, added Mobic.

[Lynne G.SD]

Hi Panda;
Welcome to the gang.We all screw up at first when joining any board so just rewrite the whole dang thing.This board will be changing a lot in the near future so it should be great fun until we get used to it.I am such a computer dummy that I expect to get lost .I have a 12 year old computer and “dial up” service because I have seen the new ones with Windows8 and just could not figure it out.Needless to say,I did not buy it.Figure this one and I will kick the bucket about the same time. hehehe
.

[jasregadoo]

Welcome Panda! A short term solution might be some prednisone. And maybe talk to some other doctors to see if you can get an rx for the mino. I’m brand new to this forum myself, and started taking mino only a couple of weeks ago, so I don’t have lots of good advice. Just thinking if you’re in so much of a flair that you can’t open yogurt or walk up stairs, something strong and fast would be a good start. For me, that was prednisone. Get things calmed down a bit, and then you can hopefully get a prescription and some advice.

[purplepanda]

Thanks for the welcome Lynne G. & jasregadoo.

Gee. I guess I did a lot of complaining in my first post. Sorry. I’ve never really been sick before, and this has hit me fast. My head is spinning.

How long should I expect RA to keep progressing or blossoming in me, or will my swelling/stiffness subside at some point and then flare off and on? Or, will I always have this degree of swelling/stiffness and it will just get worse? I don’t know what to expect…

I know nothing about prednisone. From RB, I understand it’s difficult to taper. I don’t want to have terrible side effects, but I need to be more functional. It feels as if my tendons or ligaments are tight or short. I don’t know if that’s caused by swelling or what, but it’s hard to lift my feet. I have one exercise to do where I’m on my back and have to draw my foot toward my fanny. Another one asks me to stand and bring my foot up in back of me as if I’m going to kick myself in the fanny. Those two I have a great deal of trouble with. I also have a lot of muscle wasting of my quads & calves.

Is there an anti inflammatory (less dangerous) that would work on swelling & stiffness?

Also, which RA drugs are least harmful? I have do do something.

Thank you.

11-20-15: Off Mobic. No NSAIDS.
10-14-15: Working toward Minocycline 100mg BID. Able to "lock" my knees when standing now!
9-14-15: 2nd Clindamycin IV series. Still on 5mg Prednisone & 7.5 mg Mobic per day. Swelling greatly reduced in knees.
8-15-15: Started Minocycline 100mg BID MWF to present.
5-25-15: Started generic Minocycline, 100mg MWF. Tried titrating to 100mg BID MWF over a month & went back down to 100mg MWF.
5-18-15: 1st Clindamycin IV series. Dropped Naproxen, added Mobic.

[Trudi]

@purplepanda wrote:

It feels as if my tendons or ligaments are tight or short. I don’t know if that’s caused by swelling or what, but it’s hard to lift my feet.

Hi Purple Panda–
Although these are definitively symptoms of Lyme, they can also be damage from the fluoroquinolone antibiotics (Cipro, Levaquin, etc.). These are a type of chemotherapeutic drugs and can easily have delayed side effects. If you have ever taken this type of antibiotic, do a search for fluoroquinolone toxicity.

Take care,
Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[jasregadoo]

My RA came on fast and hard, too, and like you, I’ve never been sick before, so it’s thrown me for a bit of a loop. Recently found out that 2 of my first cousins are going through the same thing. Blech.

When my RA got a lot worse quickly (perhaps due to large doses of D3 my chiropracter suggested, perhaps not), I had very tight calfs. I was on prednisone for 6 weeks. 1 week of 20mg daily, 1 week of 15mg daily, 1 week of 10mg daily, 1 week of 5 mg daily, 1 week of 2.5 mg daily, and 1 week of 2.5mg every other day. This was the taper. The week on 20 mg was fabulous, SO much improvement, so quickly. As I tapered off, a lot of the pain came back. However, the extreme swelling in my feet and ankles did not come back, nor did the tightness in my calfs. My joints are stiff, and I can’t bend my knees all of the way, my hands and feet and wrists hurt, but none as much as before I started the prednisone.

I cannot speak to what to expect, unfortunately, because I think everyone is different. I can only speak to my experience. I’ve looked at several medications for RA, and this AP protocol seems to be the one with the fewest side effects. When you first start it, and perhaps for a few months, I believe that symptoms get worse for many people, and that this is a sign that things are working as they should, believe it or not. I’ve been taking a bit of prednisone to help me through this period. I don’t know if that’s a good idea or not. My doctor is not experienced in AP, and there isn’t one nearby who is. But she is willing to let me try it, and wrote me the rx for mino. I’m trying to figure the rest out on my own, and this group has been a great help to me.

Have you seen a rheumatologist yet? I would talk to one, and see what your options are. Talk to them about your desire to try AP, if that is indeed what you want to do. There are some dietary changes that some people make that are sometimes helpful. They have not made a difference for me, but I know many people say they can help. Gluten and dairy are the big ones, it appears.

Best of luck, and I hope things get better for you quickly!

[purplepanda]

Thanks for responding & sharing your experiences, Trudi & jasregadoo. I have heard about the drug family that can damage tendons, a good reminder for me to stay away from them unless absolutely necessary. Thanks for sharing, hasregadoo. I’m sorry about your aggressive RA, and I’m glad you’ve had some reduction in swelling. Maybe we can compare notes as time goes on??

On a very slight chance that I could get mino from my endo, I gave her a call and was turned down. I don’t have a long-standing relationship with my GP, or I’d ask her. She’s also very cautious about just sticking to treating colds, flu, etc.

Was the taper off prednisone really difficult. Jasregadoo?

11-20-15: Off Mobic. No NSAIDS.
10-14-15: Working toward Minocycline 100mg BID. Able to "lock" my knees when standing now!
9-14-15: 2nd Clindamycin IV series. Still on 5mg Prednisone & 7.5 mg Mobic per day. Swelling greatly reduced in knees.
8-15-15: Started Minocycline 100mg BID MWF to present.
5-25-15: Started generic Minocycline, 100mg MWF. Tried titrating to 100mg BID MWF over a month & went back down to 100mg MWF.
5-18-15: 1st Clindamycin IV series. Dropped Naproxen, added Mobic.

[Author]

Posts