RA Advice – on Minocine for 2.5 years; starting to feel poorly

[Dunlop321]

Hi,

I’ve been on Minocine for almost 2.5 years. In that time I’ve gradully reduced by Enbrel injections and anti inflam tablets. By blood scores have also consistantly dropped, so much so that the NHS rheumy believes I’m i remission – as do I.
I continue to take 5x100ml minocine every week, and was feeling great until about 2 weeks ago, when my shoulder, feet and elbow started to display those awful RA pains. I took an enbrel jab (first in 3 months0 in the hope that it would settle down, but this hasn’t really been the case.

I’m looking for advice – is this normal, should I be worried, do I need a different antibiotic? I am praying that it is not starting again. I am going through a stressful period with moving country, moving job, selling my house and my wife undergoing IVF, and although I don’t feel stressed, I haven’t been in the best form lately. Any advice appreciated.

[Maz]

Hi Dunlop,

First, very sorry to hear about your flare after such a good innings.

Here are a few ideas:

1. Stress – you mentioned you’re in the midst of some big life events. Chronic low grade stress will stress adrenals. There are things that can be done to support adrenal function, but usually require seeing an alternative doc. Top 5 life stressors include, death of loved one, house move, job change, divorce/getting married, and a new baby. Any one of those things can create great significant change, emotional highs/lows and physical exhaustion that can very definitely initiate a flare.

2. Has your generic or brand mino been changed recently?

3. Spring flare

4. Low Vit D3

5. Low iron

6. Thyroid anomalies – hypothyroidism and hyperthyroidism can cause muscular and joint pain and swelling, along with exhaustion, malabsorption of nutrients, iron and Vit D depletion.

7. How is your diet?

8. See Scammell book, page 295 and the management of Carol Lange’s flare by Dr. Brown. Do you have access to IV clindamycin? Have you considered a dose change of mino?

9. Any recent infections?

Have you had any RA labs drawn since your symptoms began? If not, is your doc open to checking ANA, RF, anti-CCP, SED and CRP levels, as well as a CBC and metabolic panel with liver/pancreatic enzymes?

Did you feel no relief from the Humira injection? Same/worse?

[Dunlop321]

Thanks Maz, that’s a great help. Have listed out my replies below. Think I need to figure out s way to relieve this stress. Hopefully it will pass in a week or so.

1. Stress, yes
2. Changed to a non branded minocylene almost 1 year ago
3. Perhaps. Weather has been very changeable.
4. Was good last time I had it checked in Jan 16
5. Don’t know. I eat plenty of greens and red meat so I hope not. Blood counts always good.
6. Don’t know. Will mention to doc.
7. Good. Drinking a bit more caffeine than normal
8. Thank you. I’ll check out
9. No. Although I did feel a bit ill a few weeks ago
10. Blood test on Friday. All RA markers had declined in January 16 vs. sept 15
11. Felt no different after jab.

[Maz]

Dunlop321 wrote:

Thanks Maz, that’s a great help. Have listed out my replies below. Think I need to figure out s way to relieve this stress. Hopefully it will pass in a week or so.

1. Stress, yes

Yes, very definitely…stress is a monster with any autoimmune disease.

2. Changed to a non branded minocylene almost 1 year ago

Was this an elective switch or just what you were given by pharmacist? If you did well on previous brand, any chance you could switch back for a trial period to see if it makes a difference?

3. Perhaps. Weather has been very changeable.

Yes, it’s that time of year when many find themselves flaring with the changeable weather.

4. Was good last time I had it checked in Jan 16

By “good” do you mean low/mid/high range? Some docs say it’s “good” when it’s just within range.

5. Don’t know. I eat plenty of greens and red meat so I hope not. Blood counts always good.

Blood counts can be in range, but iron low. Worth asking for an iron panel to be run (including ferritin, iron saturation, Total Iron Binding Capacity (TIBC)). Iron deficiency anemia can also cause severe fatigue and rheumatic pain symptoms.

6. Don’t know. Will mention to doc.

Yes, worth getting baseline Thyroid labs run, including TSH, Free T3, Free T4 and thyroid autoantibodies. Around 70% of rheumatics have an overlap with an autoimmune thyroid disease, like Hashimoto’s, which can cause hypothyroidism, leading to low stomach acid and poor nutrient absorption. Worth also testing diurnal adrenal function (saliva), but most conventional docs do 24 hr urine collection, which doesn’t tell you as much as the 4xday saliva collection.

7. Good. Drinking a bit more caffeine than normal

Not so great for adrenals, unfortunately, though tough when stressed, I know. Have you tried doing an elimination diet of any kind. E.g. gluten, sugar, dairy?

8. Thank you. I’ll check out

In UK, Dunlop? If so, only one doc who does IV clindamycin…your mino protocol seems like a Dr. E. protocol, so if you do see him, then perhaps it would be a good idea to ask how you can tweak your protocol. If not, suggest emailing Dr. S. in Iowa to ask him what would be best for you to do. Do you have his contact info?

9. No. Although I did feel a bit ill a few weeks ago

Yes, seems to coincide with the timing of your return of symptoms? Getting rundown from stress and a passing infection could well be what is going on, Dunlop. Hopefully, this can be sorted with a dose adjustment and you may not need to look any further.

10. Blood test on Friday. All RA markers had declined in January 16 vs. sept 15

Try not to be disheartened if labs have wobbled a bit since Jan. These will go up and down with flares and blips along the way.

11. Felt no different after jab.

This may mean you’ll need to rotate to a different biologic, like Enbrel. Some people do find that the effectiveness of their biologic wears out after a period of time, as the body builds antibodies to the drug. This is why they’re commonly prescribed with a DMARD like methotrexate, to try to extend their useful life.

Let us know how you get on, Dunlop. Hope you can figure this out quickly as it sounds like you do have a lot on your plate.

[Dunlop321]

Thank you very much Maz. Going to make a conscious effort to try and not get stressed. Have upped my anti inflammatory tablets after reading that section from Dr Browns book. Defo feel a bit better today. Hopefully this will pass. Yes am in the UK, was sunny and warm last week and snowing this week. Very strange weather.

[Author]

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