Home Forums Personal History and Progress Threads RA Three Years I am much better now .

This topic contains 29 replies, has 1 voice, and was last updated by  Valsmum 2 years, 8 months ago.

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  • #304725
    Valsmum
    Participant

    September 2009 I was diagnosed with RA. I had symptoms for a year before my diagnosis, but they were not that bad. My symptoms were an achy shoulder, a stiff finger, stiff knees and a sore elbow. Usually I would have pain for a few days in one joint and then it would go away.My joint pain migrated, most of the time it would be in one area then move to another joint.
    September 2009 was different, I had terrible pain everyday,from the time I got up to the time I went to bed.

    #351351
    Valsmum
    Participant

    I read Dr Furman’s book “Eat to Live”, this book helped my brother with psoriatic arthritis feel less pain and stay off medication.

    #351352
    Valsmum
    Participant

    Well it’s been a long

    #351353
    Valsmum
    Participant

    I seem to be having side effects from the minocycline, even at a low dose of 25mg. I think antibiotics help some people that have reactive arthritis and have an infection, it makes them better. But I have a theory, its just my own idea as to why some people do better on antibiotics than traditional RA meds. With traditional RA meds you suppress your immune system because almost all of the traditional RA meds suppress the immune system, and when one does not work, a rheumatologist switches you to another immune suppressing med and so on until you die from either complications from RA or a nasty side effect of the trad. RA med prescribed. However, antibiotics do not suppress the immune system so a person with RA has a working immune system and has the chance to GET BETTER, to GET WELL. So my point is a person on antibiotics is not suppressing their immune system and their immune system might actually do its job and heal a person with rheumatoid arthritis.
    Spontaneous remission rarely happens because RA sufferers always have a suppressed immune system when taking a traditional RA med that suppresses the immune sysytem. I think the type of person that might try an alternative like antibiotics might also clean up their diet , which in turn will aid their immune system and HEAL THEM.
    Its just and idea, but my labs went from the highest sed rate of 65 to 28, just with a change in diet. Sure its hard, but I know that processed “food” and loads of sugar and dairy contribute to my pain and swelling. If I eat a grain free, dairy free, sugar free diet, I do much better, and for once I feel like I am in control of my Rheumatoid Arthritis.

    Here is a link to Mercola’s RA diet :
    http://www.mercola.com/article/rheumatoid_arthritis/index.htm

    Also It took me two years for my knees to not swell and stiffen up anymore, the change in diet also reversed my frozen elbow that was stuck for one-two years, I could not straighten it, but now it has full range of motion. My rheumatologist had seen my elbow frozen month after month and he asked me if I had fallen on it, he could not believe that it moved again.
    A good diet will heal the body inside and out.

    #351354
    Valsmum
    Participant

    It’s now December and in a week I will be at my 4 month mark. My anemia keeps getting worse and since I have been healthy my whole life & any little bump in the road doesn’t seem like a bump in the road but a huge hill to climb. I think my anemia is a side effest of medication. When I stop meds the anemia goes away.

    #351355
    Valsmum
    Participant

    January-This has been a really weird month.I have good news, after 4 months I can tolerate 100mg of minocycline without a really bad herx, I am very glad about that. Not so good news, I have really bad anemia , my hemoglobin is in the 8’s and I believe 7 is transfusion time. I had “anemia of chronic disease” a couple months ago and now I am iron deficeint and have “iron deficeint anemia”. After a bone marrow biopsy last week I was told all my iron stores are depleted. So now I have to have various tests run to see where my blood is going or where my iron is going, if I understand correctly. One of the tests run was for Celiac Sprue and my bood work came back positive for one of the tests, now for the endoscopy to cofirm Celiac….I see bunches of wheat rolling away from me forever, come back wheat ” I love to eat you”. GOSH, I hope I don’t have Celiac.

    I think the minocycline is working, I am down to 6.5 mg of prednisone, I am trying to cut a half a mg a week. I would like to taper at 1mg per week but that is waaaaay to painful for me. I take 100mg of minocycline MWF and the day I take it I feel the best. That has changed, it used to be the day I took it I was stiff and swollen.

    Looking back over the last 4 months I know I have improved, although it might be a slight improvement, I’ll take it. My lower back usually hurts from the time I get up until I go to sleep, and it has been doing a lot better this week.I believe minocycline works, slowly but surely.

    #351356
    Valsmum
    Participant

    Doing better now, so grateful.

    #351357
    Valsmum
    Participant

    Well I got my labs back this week and my crp is 3.30 and my sed rate is 35, I am back to where I started, but that’s okay. I feel scared about taking Orencia but I am doing it so I have less inflammation, less pain. I want to get off prednisone ASAP, I was around 6.5 and everything hurts so bad I’m up to 9. I was poked 5 times the other day by the nurses on my arm trying to put an IV in when I went to get an endoscopy and the nurses said my veins were thick or hard because of prednisone. I was a little discouraged because I already hate the stuff and now it’s messing with my veins. My choice to go from one immune supressor to another sounds dumb to me, but I am really hoping to get off prednisone becasue you can’t just stop prednisone cold turkey. I was on it for about 5 months and one day the pharmacy was closed and I forgot to pickup a refill so I thought I’ll be ok without it just one day. I woke up at 3 in the morning shaking and throwing up, so I drove to a 24 hour drive through pharmacy with a bowl in my lap and picked some up. I took it right away and I was fine. I didn’t know that it was that powerful of a medicine until that moment. I didn’t read much about it before I decided to take it either, big mistake.

    I have noticed on my bad herxing days I get inflammation in my chest. I’m not sure if I should decrease the mino, I was so happy to get to 100mg. I think I’ll do the ol “low and slow” , I guess for me its “lower and slower”. I’ll learn patience I guess.
    Finished a good book last night called “Padre Pio, Man of Hope” by Renzo Allegri. It made me cry a few times because even if you believe in God or don’t human suffering is hard to read about. There was a story of a woman that was a teacher and she got knocked overone day by student. She ended up having horrible pain in her spine and legs. She was confined to a bed for a year in a hospital while she had surgery after surgery, which all failed. She went home even more depressed, she drank a half a bottle of whiskey a day and took pain killers. She mentioned she didn’t want to go on anymore. Then came a healing service to her town, she was done with God and didn’t want to go. Her family sent the priest and she said she didn’t want to talk about God. He said lets talk about you and she did. She let out all 7 years of resentment and when he touched her back that night she felt something. She hadn’t been able to walk and she found that being sprawled out on the floor was the most comfortable place. The next night the same Anglican priest came back and he told her to take off her brace.He told her to get up and walk, she did and she ran to get her high heels and then she picked up her grandson and began to dance with him. Sometime later she had her back xrayed and the xray had not changed the damage was still there but she felt fine. Her story moved me the most because she seemed so sad and desperate. Well I didn’t plan this story , I guess that’s what happens when you read a book it’s on your mind.

    #351358
    Valsmum
    Participant

    I went to my rheumatologist a few weeks ago and he said I look the best he as ever seen me. I also am benefiting from the no starch diet, and avoiding dairy and nightshades. I try not eat any grains because when I do my knees swell up. Mercola says his RA patients do better when they avoid grains. I think I might have AS, because my lower back/sacrum constantly hurts and now I’m doing better by avoiding starch and when I reintroduce them I feel worse and have swelling.I feel like I’m improving, slowly but surely.

    #351359
    Valsmum
    Participant

    Yay for better labs, the best I’ve had since my diagnosis.
    sed rate 11- normal now!!!!!
    crp 1.70 (0-0.80 normal)

    Hopefully they will continue to go down, my symptoms are improving.

    #351350
    Valsmum
    Participant

    IOn another note, I read about hypersensitivity to minocycline here at RBF, the description fits me perfectly. I can tell the minocycline is helping because when I don’t take it I feel much worse, but I have to take less than the norm. I take 25-50 MWF.
    I have less swelling by far than when I started 8 months ago. My knees were both so fat and swollen all the time and so were my wrists. I look almost normal now, although I got impatient last week and cut my prednisone too fast and ended up with only one big, fat knee. It’s better, but I have a Baker’s Cyst now, ouch. I’m at 4mg and slowly weaning.

    #351360
    Valsmum
    Participant

    I am taking minocycline MWF 50 mg and I can tell it is finally helping. It’s just like all the testimonials I read, slowly you will see results, and so it is, 8 months in and I am feeling better. I can tell I have a way to go, but the intense swelling I had is REALLY better. The swelling in my knees used to be so bad all day I could not flex them straight, so I was bent over. I remember crying because I couldn’t even stand up straight. It is so different now, I still have pain in different joints, but if I keep improving I am going to be one happy lady.
    I am down to 3.5-4mg prednisone and I’m am elated, but the days I taper hurt so bad. I know it’s the tapering that is giving me a ton of pain. I just keep my mind focused on the prize and it helps me on those days, in a matter of 6-8 weeks or so I just may be off the stuff after being on it for a year. I’m trying not to get too excited and I remain cautiously optimistic.

    If you don’t fail sometimes,
    it means you weren’t trying.

    #351361
    Valsmum
    Participant

    My lower back pain has been benefiting from the No Starch Diet, I feel a little better with the help of this diet. I’s not easy but it’s better than pain.

    One more thing, I am a Roman Catholic and the other day I was talking to the priest at my parish. He told me to have the an annointing of the sick(Sacrament of the Sick) every 3 months if you have a chronic illness. I took him up on this and was annointed a few weeks ago. While I was being annointed with oil, I had a feeling of stress and pressure that has built up slowly melt away. I heard the next week on EWTN, from a chaplain in the army that when he annoints the sick soldiers sometimes their depression lifts. I just wanted to encourage any christians out there to get annointed, it will definately help the journey.

    #351362
    Valsmum
    Participant

    I am benefiting from the no-starch diet the most at this point, it has brought me much relief. I am currently taking a break from abx, but I feel so much better eating a very strict diet of chicken, turkey, fruit, and non starchy veggies. No dairy , no nightshades either, the relief this diet has brought keeps me going, it’s the longest I’ve ever done it.

    #351363
    Valsmum
    Participant

    My ESR was 54 in August and now it is 37. The “No Starch Diet” has been very beneficial for me. I have to eat very strictly, I eat only chicken, turkey, no starch veggies & fruit. I feel better and my labs are improving too, hopefully in 3 more months they will continue to go down until they are in normal range. Some arthritcs say food does not bother them, it is completely opposite for me. I feel pain within hours of eating an offensive food. My mother has the same thing happen to her when she eats tomatoes and beef, I just have it worse than her. I feel worse on new medications too, I guess I am just really hypersensitive to everything that I eat. I never really did the diet right, but when the swelling started to go down in my knees I really wanted to stick with it and see if I could reach remission. Only time will tell, but I like the way things are going this time.

    good book- The IBS Low Starch Diet, by Carol Sinclair.

    Update, After 6 months on No Starch Diet, my sed rate is normal. In August2011 it was 54 and in March 2012 it was 17. I read diets can take awhile to work for arthritis, especially if it’s a bad case, but my arthritis is doing so much better, as long as I stay away from the grains and dairy.

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