Feeling lousy, time for a wash out period?

[Joanne NJ]

Hi everyone, as you can see from my signature line I have been back on AP since 11/2013. I had been doing very well again up until two months ago. I now have pain every day, joints are swollen (feet, knees and hands is where my RA is, no problems with other joints). I feel like I am in a continuous flare with slight relief with ibuprofen. I was taking 100 mg of mino daily, so decided to slow it down and went to 100 mg M, W, F and things just keep getting worse. I do not see an AP doctor, I see a Rheumatologist who would rather see me on Methotrexate and a biologic. Any thoughts if a wash out period would help? Or any other ideas or thoughts? If I don

[Maz]

@Joanne NJ wrote:

Any thoughts if a wash out period would help? Or any other ideas or thoughts? If I don

[Joanne NJ]

Maz, thanks for your thoughts. I will do a wash out and see what happens. I have thought about DILE, as I did AP with my primary doc back in 2010 with very good results for about a year, felt I was in remission and suddenly got bad. Stopped AP, went through some denial, damage set in hands and feet. Then resumed AP in Nov 2013 with the RA doc and things were going well, with good labs too. The only immunosuppressive thing for me is occasional Prednisolne tapers, which always helps 😀 . As far as other changes in my life, the stress of loosing my 12 year old Labrador on March 5th which has been hard, and mabey hormones as I am 47 and I have changes in my cycle. No changes in my mino brand since resuming AP. The D2 was prescribed by my RA Doc, as my Vitamin D level was very low, 8.4. I am very confused on Vitamin D and RA! I would like the Dr. S info if you don’t mind. I would love to have his input. For now I will try the wash out and see how I feel. If no better, I will discuss adding something biologic the next time I see my RA doc. Thanks again for your input!

[Maz]

@Joanne NJ wrote:

Maz, thanks for your thoughts. I will do a wash out and see what happens. I have thought about DILE, as I did AP with my primary doc back in 2010 with very good results for about a year, felt I was in remission and suddenly got bad. Stopped AP, went through some denial, damage set in hands and feet. Then resumed AP in Nov 2013 with the RA doc and things were going well, with good labs too. The only immunosuppressive thing for me is occasional Prednisolne tapers, which always helps 😀 . As far as other changes in my life, the stress of loosing my 12 year old Labrador on March 5th which has been hard, and mabey hormones as I am 47 and I have changes in my cycle. No changes in my mino brand since resuming AP. The D2 was prescribed by my RA Doc, as my Vitamin D level was very low, 8.4. I am very confused on Vitamin D and RA! I would like the Dr. S info if you don’t mind. I would love to have his input. For now I will try the wash out and see how I feel. If no better, I will discuss adding something biologic the next time I see my RA doc. Thanks again for your input!

A pleasure, Joanne.

You might want to get tested for DILE as a precaution, anyway. I’m mentioning this because if you have developed it, then it’s a potential for other commonly used rheumatic drugs, too, like penicillimine, sulphasalazine and some biologics (see package insert regarding side-effects, such as “lupus-like” symptoms). It’s not a phenomenon that is restricted to mino, in other words, as much as to how a person’s unique physiology works to break down (or, in this case, not break down) certain drugs. The drug list is long for DILE and includes some anti-thyroid meds (would you be taking those post-thyroidectomy?), some heart meds and others. It’s kind of important to know if this is actually occurring, because you don’t want to find down the road that you’re having a reaction to another drug and not know what is happening. It’s sort of a heads up. It doesn’t mean the same thing will necessarily occur with another drug, but people with certain genetic haplotypes and also dealing with “slow-acetylation” can have trouble metabolizing some drugs and they build up to toxic levels in the body. It’s fairly easy to just run a few blood tests and maybe your GP would do it for you as a precaution?

Another thought – and very sorry to hear you lost your lab. I know how you feel, as I miss my lab every day since she passed a few years ago 😥 – is that I’m wondering if you might have done a recent pred taper? If so, the stress (and possibly hormone shifts – cortisol levels also spike during stressful times) might have stirred things up a bit and this could be just unfortunate timing in addition to it being spring. If a recent taper that coincides with your symptoms, could it be a rebound flare from the taper pack?

Have you had your D levels checked at intervals since starting the D2? Just wondering if they’re still low and the sup is helping or if it might help to ask your rheumy about D3 (in oil-based gel cap), which is the preferred type of D around here, believed to be more bio-available in active form.

Will send a PM with Dr. S’s contact info for you, Joanne. Hope you feel better soon. Nice to see you again, though not for the reason you had to return!

[Linda L]

I have a question regarding wash-outs. Is it 7 days only or can last longer?
Linda L.

RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygous

[lynnie_sydney]

Linda
Am not sure the reason for your question. The suggested washout period of a week is generally because that is the amount of time for the mino to be out of the system and then people can re-start on a lower dose etc. If there is a medical/surgical or other reason why it has to be longer, then it has to be. The aim generally with washouts is not to lose any gains made on the current regime but to have the half life of the medication completely out of the system before re-starting on a different dose.

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)

[Linda L]

Thank you Lynnie. Yes, I am thinking to lower the dose of Mino and to see if the pain is smaller. I understand now why the wash-out shouldn’t be too long.
Linda L.

RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygous

[Joanne NJ]

Maz, thanks again for your thoughts and the condolences about my lab. They are a great breed and she is being missed so much by me and my family. My last pred taper was on March 26th, I would like to do another as it always helps, but I also try to avoid whenever I can. I am also struggling with allergy season (at full swing here in New Jersey). The only thing I take for my Thyroid removal is Synthroid. Any chance there could be a problem with that drug? I have a friend that just switched from Synthroid to Armour, but for some reason I always thought that once you started with Synthroid, a change should not be made. The only other med right now is lots of ibuprofen (sometimes the PM version as it helps with sleep and my allergies) I will talk to my primary doc about the testing for DILE and continue the wash out for now. (my last mino pill was Friday). My vitamin d was checked again about 6 months ago and was much improved, but I can’t remember what the exact result was. Thanks for the Dr. S info, I will reach out to him. I am still feeling lousy today, everything in my power to drag myself into work! Hoping I can resume the mino next week and get back on track.-Joanne

[Author]

Posts