Swelling?

[Dena]

Oh, Bobbie–the pred pack.  Read on.

Folks, I'm back on.  Like Bobbie, I have been on mino for 9 years.  It got my RA factor down to 30, sed rate and C-reactive protein back to normal.   That made the pain tolerable and range of motion better.  The beginning of this year I reported that RA factor had suddenly shot up to 141 and I ached all over with a lot of pain and swelling in the left ankle.  Then I thought the culprit was two months of being on Boniva, so I stopped taking it and felt better for about a month.

Recently, my both ankles started in and the left ankle got huge (should see all the compression things I have and ice packs, etc, and cane just in case).  Then both shoulders got really bad and I'm having trouble raising my arms as I did 10 years ago.  Just got back my blood test results from the test last week: RA is 130 but Sed is 29 and C -reactive protein is high again and a new one: CPR is high.  I'm devastated. 

 I asked a few months ago whether AP therapy stops working after 9 years and I'm terrified of the answer these results may be giving me.  My whole body is inflamed.  Going to see my doctor next week and I was just thinking a pred step-down pack might help jolt everything back to normal when I read Bobbie's note.

What do you all think?  Dena

[Maz]

[user=142]Dena[/user] wrote:

Recently, my both ankles started in and the left ankle got huge (should see all the compression things I have and ice packs, etc, and cane just in case).  Then both shoulders got really bad and I'm having trouble raising my arms as I did 10 years ago.  Just got back my blood test results from the test last week: RA is 130 but Sed is 29 and C -reactive protein is high again and a new one: CPR is high.  I'm devastated. 

I asked a few months ago whether AP therapy stops working after 9 years and I'm terrified of the answer these results may be giving me.  My whole body is inflamed.  Going to see my doctor next week and I was just thinking a pred step-down pack might help jolt everything back to normal when I read Bobbie's note.

What do you all think? 

Hi Dena,

Don't know if this will be any help, but was listening in to the Dr S (TN/GA) chat last night on the rheumaticsupport.net site. He got his own RA into remission on this combo:

Minocin (100mg bid MWF), flagyl (250mg bid 3 times per week), nizoral (200mg 3 times per week), Diflucan (200mg once weekly).

 

He also commented that when someone is unable to take mino anymore to substitute with another antibiotic for a while, like azithromycin or clarithromycin. You've been on mino a long while, so maybe it's just time to rotate the mino for 6 months or so and see how you go? I took a combo of tetracycline and clarithromycin all last year and did very well on this.  

 

I know how awful it is when your ankles blow up. I've been hobbling around today with my left ankle, as well. It just blew up overnight…excruciating to step on. I'm thinking of asking my doc to try adding the pulsed flagyl for a while. Dr S is a strong supporter of using flagyl, as his belief is that many of the organisms that ail us reside in the gut.

 

When I asked Dr S what the link could be between my brother's MS and my RA, without any hesitation, at all, he said “clamydia pneumoniae.” I'd wondered for a while if this might be a part of my own pathogen load, having looked at the cpnhelp.org website (Stratton/Wheldon Protocols) a number of times in relation to my brother's MS. Chlamydia Pneumoniae is an a-typical “walking pneumonia” that is normally treated with a short course of a macrolide, like zith or clarithromycin…sometimes doxy. I'm currently on zith and this might explain why I have had such rotten herxes 4 or 5 days after my pulsed dose.   

 

Anyway…just thought to share Dr S's protocol with you, in case it might be of interest to you or others. Being an RA sufferer, himself, I have to wonder if he might be onto something with all this.

 

Hope you feel better soon, Dena.

 

Peace, Maz

 

[Dena]

Maz you are great:D

I'm going to print what you wrote and take it to my doctor next week.

I think I was getting dehydrated, so several days ago, mostly because of the 10 pound weight gain, I quit the cokes and starting pushing water with lemon and artificial sweenter and cranberry juice.  By yesterday I had lost 4 pounds.

I had a prescription filled for zoloft when I realized I had been out of it for almost two months–it is prescribed for pain.  Started taking it three days ago.  Got to the beach yesterday for a great range of motion work out in the salt water.  Today, I'm feeling a little better.  Will continue with the good fluids and zoloft (can't believe I lost track of it) and see things continue to get better.

Yesterday I took 200 mg of minocycline.  Won't be taking more until Monday.  I'm not sure about this but will pulse at that level until something else gets figured out.

The last two nights I took darvocet instead of tylenol arthritis strength as I have not been sleeping well because of the pain.  That helped.  However, the last three nights I have had a little nausea which subsided.  I am rarely nauseaus.  Just keeping track of symptoms for when I see the doctor.

Thanks so much, as always for you help.  My left ankle is still swollen but it doesn't hurt to walk on it today.  Go figure!  Dena

[Sierra]

Try the restorative yoga pose “legs up the wall” if you can. Lie on the floor with your bottom as close to a wall as you can get it and place your legs straight up, against the wall.

Massage is a also a great idea–do self-massage daily and professional massage as often as you can afford it.

Sierra

[Author]

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