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Let me first say that I have been so blown away by the compassion and helpfulness shown by the people on this board. It’s very encouraging and comforting.
I was diagnosed with RA back in 2008 after the birth of my daughter. But, my joint pains had actually begun in 2004 soon after we had moved into a new house. It started as excruciating migratory joint pains that would occur 3-4 times a month or so staying for roughly 2-3 days. After those 2-3 days everything would return to normal. I had no morning stiffness or swelling and any impact on joint function. At this time I had consulted with Dr. T in Boston, who suggested that I had Palindromic RA that could possibly develop into full-blown RA later. (I was unaware of the AP at this point)
This pattern of intermittent, migratory joint pain continued up until the time I got pregnant with my daughter and pregnancy eased all pain. All that changed around 6-8 weeks post-partum in Summer 2008, when joint pains hit me with a vengeance. There wasn’t a joint in my body that didn’t hurt; I was pretty much bed-ridden and couldn’t care for myself or for my newborn. I saw a doctor locally who handed me the RA diagnosis and put me on Etodolac (300 mg x3) and plaquenil initially, that didn’t help much. Then prednisone (7.5 mg initially, then tapered to 5 mg continued currently) was added and that helped me become mobile and achieve 70-75% functional capacity tops. But, I kept researching for alternatives that would make me feel better again and more like myself. One of my nightly online research sessions led me to AP and the treatment made a lot more sense to me than taking immuno-suppressive drugs.
In Summer of 2009, I went back to see Dr T as I was flaring and the solution proposed by my local doctor wasn’t appealing to me. At that time, Dr. T added Methotrexate instead of Mino (12.5 mg weekly initially, currently 17.5 mg weekly) to my regimen since I was flaring badly. I agreed to take it then because I had to be able enough to take care of my baby. And, it’s just been now since a month that I have been finally able to get Minocycline that I have been wanting to get into all along. FINALLY…. my persistence has paid off…
So, I have the following questions or areas of concern and would appreciate tremendously any insights that people can share:
1. I want to wean off Prednisone. I had tried to taper earlier this Summer by reducing 0.5 mg every two weeks. I was able to go all the way to 1 mg from 5 mg but got into a very bad flare and had to go up to 5 mg again and also had to increase my Methotrexate in the bargain. 😐 I would like to try to taper once again but I am scared. I don’t want to be in a bad condition where I am unable to care for a very active 2 year old. Dr T has given me a prescription for the 1mg tablets and left it to me as to how slow/fast I want to take it. Does anybody have any ideas or suggestions on how I could get off of this thing and do it safely? Also, since I have just started Mino since a month, would it be better to wait a couple of months to give Mino a chance to get in the system before I start tapering? I think that might cover the initial herxing period although I must say that I haven’t seen any major herxing as such, probably all thanks to Prednisone.
2. I am currently taking a probiotic with Bifidus and Lactobacillus that has 5B CFUs per capsule. I take 6 capsules. Any suggestions on what brand or dosage or type of strains that have worked well for people?
3. Dr. T has put me on 100 mg once daily generic Minocycline saying that these days generics have come pretty close to brand name Minocin. I would like to know if the Minocin has worked better in general.
4. I currently take Minocycline at bedtime ( 2-2.5 hours after dinner) and drink warm milk after an hour or so before going to bed. I would like to know if this is OK in the sense it doesn’t cause any problems with absorption of Mino.
5. In my research, I had come across that Vitamin D can have a major role to play in rheumatic diseases. So, I am currently supplementing with 6000 IUs of D3. Haven’t had my Vitamin D levels tested though. Does anyone have any thoughts about Vitamin D supplementation and its effects?
6. I am also considering supplementing with Vitamin C and Magnesium. Can anyone shed some light on what dosage and brands might be best? I have seen Magnesium combined with Zinc and/Calcium and am not sure which one I should pick.
Sorry if the list of questions ran too long but would truly appreciate any thoughts that people can share. Thanks for the help.
Best,
MiniHi Mini,
I’m new to AP, so I can’t really answer any of your questions on medication. But I have some self experimentation information with Vitamin D and C supplementation. For Vit D I had my serum levels tested and even with supplementing 4000 IU daily my serum measured 48 ng/ml (in the range, but some feel still too low).
Vit C I take 2 grams per day unless I feel a cold coming on. If I feel under the weather I just take 4 g a couple times a day until I feel better or can’t tolerate any more (see link below on tolerance). I think I need more Vit C because I stick to a low carb diet due joint swelling when I eat starch.
Here is a great post on how Vit C supports the immune system:
http://perfecthealthdiet.com/?p=636Another post on supplements overall:
http://perfecthealthdiet.com/?cat=8Also I take 800 mg of Mag Citrate daily. I dont think the brand matters as much as avoiding brands with fillers or chemicals that bother you. In my case I’m very sensitive to starches and dyes, so I try to buy brands that advertise that they are starch free (as well as gluten, soy and corn).
I’m currently taking the generic minocylin made by Watson. I have ordered the brand name thru the intertubes and can post once I have had a chance to take it.
Best
Hi Mini,
I too am a newbie so I can’t really answer any of your questions as I just took my first dose of minocycline today. I am interested in what other’s responses will be about tapering the prednisone. I currently take 7.5 mgs a day, if I drop below that I’m in a lot of pain. I too have children, ages 3 and 5, so pain and not being able to move is not an option for me. I asked my AP Dr the same question about the minocin vs minocycline and he said that they are pretty much the same. Also, my insurance wouldn’t cover the minocin, so out o pocket it would have been $155 for 12 pills! Good luck with your journey!Amy
@RAinPA wrote:
Hi Mini,
I too am a newbie so I can’t really answer any of your questions as I just took my first dose of minocycline today. I am interested in what other’s responses will be about tapering the prednisone. I currently take 7.5 mgs a day, if I drop below that I’m in a lot of pain. I too have children, ages 3 and 5, so pain and not being able to move is not an option for me. I asked my AP Dr the same question about the minocin vs minocycline and he said that they are pretty much the same. Also, my insurance wouldn’t cover the minocin, so out o pocket it would have been $155 for 12 pills! Good luck with your journey!Amy
Mini/Amy – try using the search function above and type in something like ‘weaning pred’. Lots of interesting and useful past discussion will come up. Use the search function at top of Forum list rather than just in this thread.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)Lynnie – I will try the search, Thanks.
Szara – Thanks for sharing the web site and your thoughts on how you approach supplementation. Do you also take any other supplements besides the vitamins C, D and Magnesium that you have found helpful? Good luck to you with AP!
Amy – I feel your pain regarding not being able to reduce Prednisone. I would love to stop it cold turkey but my previous failed attempt dictates that I would rather not. How long have you been on it? I have been taking it for two years now and don’t want to be on it for very long…Good luck ahead!
Hi Mini,
I started on the prednisone in November 2009 but I was able to get off of it completely this year, in June. Then I stopped taking my methotrexate in September so I had to go back onto the prednisone. At that time I started with 10mgs, now I’m down to 7.5mgs a day. I’m thinking of trying to start tapering down to 5 starting tomorrow. I just hope that by doing so, I don’t cause a flare.Hi there,
I have a book(Rheumatoid Arthritis, Infection Connection) and in it there is info about tapering 1mg a week for prednisone and I thought this was a bit fast, but in fact I am trying it myself right now. I have read what others on the board have done and they take 2 weeks per 1 mg. Everybody is different though.They say to cut your dose in half too, one in the morning and one at night. I noticed when I cut my dose in half I don’t feel so shakey or jittery. I am right about where you are, 7-8 mg. I am trying to see how tapering 1mg a week suits me. Well I hope the best for you, take care.
SheriGood Evening,
Amy – I am glad to hear that you were able to kick Prednisone once; I am sure you can do it again safely. Everybody reacts to drugs differently. I had trouble tapering 1 mg every 2 weeks, so this time I am thinking of going even slower. When you weaned earlier, did you follow any tapering schedule or kind of went with the flow?
Sheri – Thank you for sharing the information on the Pred weaning. Cutting the dose in half sounds like a great idea. I had also come across an ‘alternate day tapering schedule’ online. It seemed to indicate that the process kind of fools your body into starting/increasing its own production of the hormone. Actually, I also remember that my previous doctor had used something like this to bring me down from 7.5 mg to 5 mg, when I had flared earlier. It seemed to work OK, however, I was on 7.5 mg just for 2 or 3 weeks at that time. I am kind of leaning towards doing that but not too sure.
Also, will it be better to give Mino a chance to stabilize things before weaning? What do you guys think?
Best Health,
MiniMini,
I didn’t have any set schedule in the tapering. My Dr just left it up to me according to how I was feeling. I did alternate days though per his instructions. So since I took 7.5 today, I would take 5 tomorrow, then Saturday back to 7.5, then 5 Sunday and so on for a week, then go to straight 5 for a few weeks until I feel as though I want to try and cut back more. The first time I tried tapering, I went from 10mgs one day to 5 the next…very bad idea! I couldn’t move! (at that point, my Dr didn’t explain the alternating days) I like the cutting back 1 mg at a time idea. The tablets I have though are 10 mgs each so I’m already cutting them down. I will definitely keep that in mind though when I get below 5 mgs.Oh no! Going from 10 mg to 5 overnight would have been bad! But it’s nice that you were able to get off of it after all. 1 mg prescription will come in handy if you want to take it a little slower below 5 mg.
I do have a 1 mg prescription and when I decide to beging weaning, I will most probably do the alternate day taper for a week to 10 days just like you did and kind of listen to my body from there. 🙂
Best wishes,
MIniHi Mini,
I don’t have any experience with RA (so far) but I am wishing you the very best of luck and I want to mention something that occurred to me while reading your post. You said that your pain vanished during pregnancy and then returned with a vengeance. I know that a lot of this is just due to the way our body moderates itself so our immune system does not attack the baby while in utero (since it is 50% foreign DNA).
That said, pregnancy is a time of heightened progesterone levels – they really soar which causes a lot of muscle relaxation. When you give birth, the progesterone levels can drop dramatically within a few weeks.
After feeling just wretched for over a year after the birth of my third child, my LLMD/ND tested my female hormones and discovered that toward the end of my cycle, my progesterone was desperately low. My level was just above 1 when the normal range for that time of month should have been as high as 20 or more. She began me immediately on progesterone cream supplementation and within days I experienced noticeable improvement in many of my symptoms.
Lyme and co-infections are known for messing with the hormones including the thyroid and adrenals. The adrenals are responsible for progesterone production. So, if you have RA from lyme, you may also suffer from adrenal insufficiency and low progesterone. In my own case, supplementation has been really amazing at helping me move forward in my healing.
Just wanted to throw that out there, in case you haven’t had your hormone levels checked. The progesterone should be checked toward the end of the month, I think my ND said around the 18-20th day of your cycle.
Take care and best wishes!
@hopefulmama wrote:
That said, pregnancy is a time of heightened progesterone levels – they really soar which causes a lot of muscle relaxation. When you give birth, the progesterone levels can drop dramatically within a few weeks.
After feeling just wretched for over a year after the birth of my third child, my LLMD/ND tested my female hormones and discovered that toward the end of my cycle, my progesterone was desperately low. My level was just above 1 when the normal range for that time of month should have been as high as 20 or more. She began me immediately on progesterone cream supplementation and within days I experienced noticeable improvement in many of my symptoms.
Lyme and co-infections are known for messing with the hormones including the thyroid and adrenals. The adrenals are responsible for progesterone production. So, if you have RA from lyme, you may also suffer from adrenal insufficiency and low progesterone. In my own case, supplementation has been really amazing at helping me move forward in my healing.
Hi HopefulMama,
Thank you so much for sharing this. I have always noticed that my symptoms vary through the length of my cycle but kind consistently each and every cycle! So, the possibility of hormones, i.e. progesterone having something to do with this looks very real to me. I haven’t had my hormone levels tested as such. I am currently seeing a Rheumatologist for my RA; is this best posed to the Rheumatologist or a PCP?
I think that I was tested for Lyme initially by my PCP and was negative; but I believe that was the general Lyme test and not the IGENEX one that people recommend on this board. I don’t know if I have been tested by the Rheumatologist, but I kind of always have it at the back of my mind…
I will mention testing for lyme and hormones next time I see my doctor.
I really appreciate you taking the time to read through my post and sharing your thoughts.
Best wishes and health to you.
MiniHopefulmama,
What kind of doctor do you go to get your hormones checked ? I think it is a good idea too .
Thank you,
SheriThere are a few different types of doctors that can test your female hormones. I’ve had mine run in the past by my regular GP (general practitioner) – which I think is the same as PCP? Also by my OB-GYN; and by my naturopath and the LLMD/ND who is also a naturopath. Essentially, anyone who is qualified to give you a lab slip can run your hormone work. Some practitioners believe that saliva testing is accurate for hormones and others believe that blood is the best way to test. Blood is probably cheaper and more likely to be covered by your insurance.
I guess I would say ask a doctor that you trust who you think will be comfortable giving you a copy of your records and going over them with you, so that you can see for yourself what your hormones are doing. Oh, and usually when they test female hormones they check them twice – once at the beginning of your cycle and then again at or around day 18-20. This helps them to see what your estrogen and progesterone (and sometimes testosterone) are doing at various times of your cycle. The same practitioner can also order thyroid tests. I have seen a lot of specialists, so it was an endocrinologist who ordered the cortisol stim test for my adrenals (which I do *not* recommend, especially if you suspect you may have lyme — I was nearly unable to walk for two days after that darn cortisone injection)… (the stim test is also a blood test, they check your blood level of cortisol pre and post getting the injection). I think you can get valid enough information about adrenal function just by getting a saliva test done for your AM and PM adrenal levels… and that can be ordered by your GP or a naturopath.
The one thing I have learned about GPs is that while they are good at looking at you as a whole person, they do not always have the same depth or breadth of knowledge as a person who specializes in the area you are looking at. So, if you really want to understand what your hormones are doing probably the best kind of person to see is someone who specializes in reproductivity and hormones such as a gynecologist or endocrinologist. That said, my lyme literate naturopath is the one who actually figured out this hormonal problem for me… after two different OB-GYNs and an endo all told me that my female hormones were unlikely to be the problem as I am only 34 and have 3 healthy children. LOL! They were soooo wrong. So, maybe a naturopath or GP is the way to go after all 😀
As for lyme testing, I was negative through Labcorp and positive via IgeneX. The thing that really helped us to believe in the IgeneX testing though, was the fact that I later came up positive for babesia microti on another IgeneX test where I was simultaneously negative for babesia duncani and all forms of bartonella. Dr Y, my LLMD, said that IgeneX uses the exact same test kit for babesia that all of the other labs like Quest and Labcorp use, they just check it more carefully. So, being definitively positive for babesia and mycoplasma by a test that is used universally, it makes perfect sense that my Igenex borrelia burgdorferi results would be accurate. Because what are the odds that a person would randomly get babesia and mycoplasma without lyme? LOL. I guess anything is possible. For what it is worth, I trust the IgeneX testing.
I also know that a lot of people test negative for lyme in the beginning when their immune systems are terribly depressed and then a few weeks or months into antibiotic treatment they develop antibodies and come up positive for the lyme afterall. I met a woman at my LLMD’s office who tested negative for lyme but got treated anyway based on clinical symptoms and suspicion… and she went from paralyzed back to 99% normal thanks to lyme and co-infection treatment. That story alone makes it worth pursuing, for me!
Good luck! Keep us posted.
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