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Hello everyone, I love reading all our posts and using the info that you offer, it always cheers me up on days when I need it. I have been on AP for 8 months now, I think I have improved quite a bit, I even weaned my prednisone for 2 weeks and then symptoms started returning. I went in and had a bunch of blood tests run, and my labs are much worse. My anti ccp is over 250 and now I am anemic. I asked my Rheumatologist about this and he said most RA patients are anemic and he is not worried, he also said do not bother with iron supplements as it is not an iron deficient anemia but related to the disease, has anyone else been told this? He feels I should stay with the AP therapy for now as he is not concerned with labs, he feels I have improved physically and that is more important. The only problem with that is I am so so so tired I can hardly function lately. I started a new job which is more demanding but I should not be this tired all the time, and now I am flaring. In addition to that my hair is falling out, not in patches, just constant shedding, I stopped the 2mg of prednisone cause I thought it was the problem but all docs say that dose would not cause hair loss and to stay with the 2mg cause it keeps the inflammation down and doesnt make me ill like naproxen. I need some direction..has anyone experienced any of this? Would love some input. thanks so much.
I too was just told I was anemic and at first it seems discouraging, but after reading “The Road Back” , Dr. Brown writes that it will lift as you get better. Your rheumy was right the iron won't really help because your anemia stems from the RA. Most of the time they call it Anemia of Chronic disease. My rheumy had me go to a hemotologist and he checked everything out & told me it was anemia of chronic disease. I have RA as well.
You are on the right course with your antibiotics and I wish I was down to 2mg of prednisone, I'm around 9mg and usually I'm at 5mg but since I started AP I had to add a little more so the abx could penetrate. My anemia is around 9 but I just remain hopeful that as I get better so will my labs. I never knew prednisone could cause hair to fall out but it makes sense, being that it's a synthetic hormone and after having a baby a lot of women loose hair postpartum, usually due to changes in hormones. That is just something I thought of, I'm not sure about it though. Well I hope you feel better.
You have been on AP for 8 months, are your symptoms better?Are your labs better? I'm just curious, I have only been on AP for a little over a month.
I was also told that I was anemic. My Doc (not Rhumy) treated with IV ferritin, which was helpful. The treatment consisted of 4 IV's over a month period. Was a bit expensive, but helpful.
Hope you find something that helps you,
Donna RA and Lyme
Thank you everyone, Even though my labs are worse, I feel so so much better. It has been so hard but I stayed with the prednisone through it, I strted with 5mg and then over 8 months gradually went to none. I found that if I divided the dose like 2.5 in morning and 2.5 in the evening I had better control and could take much less than if I took it all at once. My other docs explained the hair loss the same as when you have a baby and have said I will not loose it all I will just shed and it didnt happen until I tapered way low to 2 mg. But it is a bit frightening when it happens, not sure why my rheumy believes prednisone has no involvement. He did say the anemia would resolve on its own that it is caused by proteins being secceted from the inflammatioon and that if you control the inflammation it will resolve. I do think i will have to take 1 mg of prednisone again for awhile as the Naproxen does not seem to do anything for me. Overall, even though I have concernes, I am 80% better than I was 8 months ago!!! My family is amazed by the difference but before I wanted to improve and now I sorta want it all, and want to feel no pain or swelling and not have to think about it. The first 3 months are definitely the hardest. Does anyone take plaquenil with their minocin??? Something I am considering.
bothers me that docs opinions vary so much, how my Rheumy says no to the hair loss from pred and a family doc says yes. I really value the Rheumy and expect him to be the expert on this…I really believe it is the cause and appreciate all of your input on what you Rheumies have said…Good luck to those of you just starting it is very tough but really does work, just have to get through the herxing in the beginning.
[user=2335]zakdog[/user] wrote:
Thank you everyone, Even though my labs are worse, I feel so so much better.
That is exactly what happened to me when I first started on mino – felt wonderful and labs worsened. It can happen that labs “herx” too. My RF went UP after I started feeling really good, then came down dramatically. My testimonial gives some details about this if you are interested, link is below. Lynnie
https://www.roadback.org/index.cfm/fuseaction/community.display/display_id/490.html
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)Incidentally, the amemia issue is addressed in Dr Brown's book The Road Back which is contained within The New Arthritis Breakthrough by Henry Scammell (pages 144 and 159). Also in Pat Ganger and Carol Lange's book 'Why Arthritis?' the subject is discussed throughout the book. On Page 144 it states 'The damaged bone marrow is why arthritics are anemic and do not respond to iron, liver or B12 and other things to build up their blood………..But if you treat the infectious component that is the trouble behind all this with antibiotics, the bone marrow will recover and hemoglobin will rise” . Lynnie
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)Thanks Lynne, I will pull out my book and read those pages again regarding anemia, also I will check out your link as I was a a bit shocked when I saw my labs and really thought they would have improved. I am looking at starting some yoga and pilates also, I saw a sport med doc for another reason and she said even though I am improving I really need to work on my flexibility and gain some of it back, she encouraged me to start pilates and yoga even if I have to skip certain exercises….wish me luck.
Hi! I am also Anemic due to the RA/MCTD…so that is correct. And my dr doesnt have me on any iron pills bc as your dr stated it is not a deficiency in iron. My dr did put me on Vit B complex. Not sure if that was what helped with the fatigue or just time from bieng on mino. But my fatigue is gone. YAY!
AS far as the plaquinil. I do take it with my mino too….and I just started LDN as of last night.
As far as the hair shedding…that was a night mare , and it will last about 3mths after tapering off prednisone. I had that all the times I tapered down on prednisone. IT is so frustrating. I found taking prenatal vitamins have helped that. I also use Nioxin hair thinning shampoo and condiitoner. I was never above 5mg…so it doesnt matter the dose…I even did at 1mg….its any tapering. I didnt shed as much when I reduced by 0.5mg….going slowly seemed to help GREATLY!!!
Hope this helps…..FYI: I am currently pred free. I will occasionally take it when I have a flare…maybe once a week…if that or twice a month…but I only take it for 2-4 days so that I dont have to wean.
Just a quick question, were you on the plaquenil before you started the mino?? And do you have any shedding if you use your pred just periodically, I ask cause I stopped mine 2-3 weeks ago and then the last two days I took 1 mg due to some swelling and pain. Any side effects from the plaquenil?? thanks so much.
[user=2335]zakdog[/user] wrote:
I have been on AP for 8 months now, I think I have improved quite a bit, I even weaned my prednisone for 2 weeks and then symptoms started returning.
Hi zakdog,
How long were you on prednisone, and how much were you taking when you started weaning yourself off of it?
[user=2335]zakdog[/user] wrote:
The only problem with that is I am so so so tired I can hardly function lately.
One of the possible reasons for your fatigue is that you are taking minocycline every day (if your sig is current). Not only is the mino suppressing protein synthesis in the bacteria, it is also suppressing, to a lesser extent, protein synthesis in the cells of your body. That's why Dr. Brown used pulsed dosing– it gives the cells of the body four days of recovery time every week.
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinHi! No I dont have any side effects from plaquinil. I have been on that medication for years.I have been on mino now for 11mths.
No now I dont get the hair shedding just from using pred here and there. But the shedding did last for 3mths after I stopped pred.
Hope this helps!
Hi Zak. I also take both plaquenil and minocycline. I started both at the same time (about 3 years ago) and have, with my rheumatologist's approval, tapered down the plaquenil. I started at 400 mg/day, went down to 300, then 200, then 100. Now I take just 400mg/week — one pill each Saturday and Sunday, and my mino M,W,F.
The plaquenil was hard on my stomach at first — but I was also taking the mino and celebrex — all of which can make you a little queasy. It got better after a few months. I do get my eyes checked regularly — but that's easy for me because my husband is an ophthalmologist!
So it is certainly something to consider — very little downside, and may help you control the disease. Good luck
Bonnie
Bonnie Lou
RA 02/07,AP 10/07
Minocycline 200mg MWF; Plaquenil 100mg 3 days/week
Fish Oil, Ubiquinol, Turmeric, Vit C (2 grams) , MultiVit, Magnesium, Astaxanthin, D3 (5000), probiotics and a daily dose of yoga!
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