Herx reaction

[Dunlop321]

I started minocylene c. 6 weeks ago.

My symptoms have increased a lot in that time. One thing I have noticed is that some of the pains Around my shoulders, arms and knees feels like lactic acid I.e the pain I used to get pre RA from a lot of exercise. I’m also have trouble lifting both shoulders with RA pain.

Is this the Herx affect and or has anybody else experienced pains like this when they started minocylene treatment?

Thanks

[lemons]

I started Minocin 4 months ago and it has only been in the last couple of weeks that I have started to see some amazing progress. I was beginning to think the treatment with antibiotics wasn’t working but this is what I have done today…..woke up at 6am, showered, dressed, make up, hair, all done within an hour. Fed dog, walked dog, ironed some laundry, went to supermarket & carried bags back to the car, prepared, cooked & served dinner for 6 people, filled dishwasher, emptied dishwasher, made sandwiches for husbands lunch tomorrow and repotted a large garden shrub. To any one without RA this would mean nothing, just an average day ,but 7 months ago I was bed ridden with a sudden, out of the blue attack of rheumatoid arthritis. I am only taking Minocin, nothing else, no steroids, no plaquenil nothing and things are changing. You are only into week 6, I was still in agony up till a fortnight ago. This is a slow treatment but I am in it for the long haul and Im not going to let this f****** disease beat me. Embrace the pain in your shoulders and let it go, the chances are its a Herx and that is good.

[Dunlop321]

That is great news Lemons. Great to hear it is working for you and yes that does offer hope.

[lemons]

My shoulders felt like someone was driving a 10 ” nail through them and then some more 😥 Pain has now subsided and energy is returning. Im going to same clinic as you are.

[Dunlop321]

My shoulders are very similar. Constant throbbing at night and have severe difficulty moving my left arm. The lactic acid in my neck and around my elbows is weird and I’m hoping that is the Herx effect.

Am delighted to see it is working for you but from looking at your summary surprised that you weren’t on biologicals or methotrexate which seems to be very popular in the Uk. Did you also try the elimination diets at our clinic?

[lemons]

I haven’t been on any diets. I was referred to an NHS rheumatologist when first diagnosed and found him to be a patronising rude and unpleasant little man. I had already read up on AP treatment and asked if he would let me try it, but he refused to prescribe Minocin so I went to the BW clinic. The only things I take are the supplements I have listed and sometimes, rarely an ibuprofen.

[Dunlop321]

Hi lemons. How is your RA this week? I do hope you are well. I’ve read some of your other posts which do offer me encouragement.

Mine is still very active with my hips, shoulders, knees and elbows still very sore. My Mobic tablets are not really easing the pain so think I will try some ibrouprofin like you. In addition the has been an mess up with the Enbrel and nobody around Herts can renew their subscription!!

[PhilC]

Hi,
@Dunlop321 wrote:

My Mobic tablets are not really easing the pain so think I will try some ibrouprofin like you.

What dose are you are on, and are you taking the Mobic consistently, every day?

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[lemons]

Hello Dunlop, I have had a good week thanks. Although I still have some inflammation in fingers, knees, backs of ankles, Im not in pain. I realise steroids were part of Dr Browns protocol too & they would most likely help, but I am personally against taking them. I have been sleeping a lot better lately too, proper deep sleep. Where in Hertfordshire are you ? I haven’t really been sticking to any diet, but have tried to cut down on dairy & gluten however on stumbling across the best bakery ever last week in a little Hertfordshire village, I had to buy some of their organic bread. I made home made soup for everyones lunch to accompany this beautiful wholemeal crusty loaf. I sliced it up so as everyone could help themselves along with some Cornish butter & couldn’t resist some myself. What harm could it do ? it looked so healthy, brimming with goodness……the next day I felt like shit ! Swollen, throbbing fingers, very depressed & utterly miserable. Im now coming round to the idea that gluten plays a big role in these diseases 🙁

[Dunlop321]

Hi Phil,

Mobic is a 7.5mg tablet, but I don’t consistently take it every day. I used to get away with one or two a week but since I started the minocylene I am starting to struggle to walk, lift my arms, move fingers without grimacing or groaning in pain.

[Dunlop321]

Hi lemons,

I don’t believe I’m allergic to gluten after carrying out the elimination diets in bw clinic.

I’m in Hertford. How bout u?

[PhilC]

Hi,
@Dunlop321 wrote:

Mobic is a 7.5mg tablet, but I don’t consistently take it every day. I used to get away with one or two a week but since I started the minocylene I am starting to struggle to walk, lift my arms, move fingers without grimacing or groaning in pain.

If you aren’t taking Mobic every day then you cannot say with any certainty that it isn’t helping much. Don’t think of it as a painkiller, think of it as a medicine that helps prevent joint pain by reducing inflammation.

If Enbrel stopped working for you, why are you still on it? Have you talked to your doctor about the possibility of switching to some other drug?

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[PhilC]

Hi,
@lemons wrote:

I haven’t really been sticking to any diet, but have tried to cut down on dairy & gluten however on stumbling across the best bakery ever last week in a little Hertfordshire village, I had to buy some of their organic bread. I made home made soup for everyones lunch to accompany this beautiful wholemeal crusty loaf. I sliced it up so as everyone could help themselves along with some Cornish butter & couldn’t resist some myself. What harm could it do ? it looked so healthy, brimming with goodness……the next day I felt like shit ! Swollen, throbbing fingers, very depressed & utterly miserable. Im now coming round to the idea that gluten plays a big role in these diseases 🙁

You may be right about the gluten, but one cannot be certain without some additional experimentation because there are too many variables. For example, some bread contains milk and/or other dairy products, and you did put butter on the bread. Also, what was in the soup?

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[lemons]

Hi Phil thanks for the reply, I didn’t have any of the butter I just looked at it longingly and had the bread. Soup was vegetables with homemade stock, and the only fat used was rice bran oil. I think I may have a problem with yeast in foods ,as I used to eat Marmite (don’t know if you have it in the US?) its a savoury spread u put on toast made from yeast. Always felt bloated after eating it. Dunlop, Im from Letchworth but now live in Bucks. Do u have your own NHS rheumatologist and GP plus BW clinic ? Phils right, if somethings not working why are u still taking it ? As for the Minocin, I felt like death too at first and it really does sound like u are Herxing. You are only at the very beginning of treatment and on a low dose, same as me. I am into month 4, still considered early days but the improvements are now trickling in everyday. I admit I am concerned about swelling in my wrists and fingers but I just don’t want to take steroids. Saying that though, my left hand is now starting to go down and synovial swelling is much improved.

[Dunlop321]

Thanks for your advice on the Mobic Phil. I will try that.

As for the Enbrel, I’m trying to get onto something new as I know for the last year it has lost effectiveness. My RA put me on hydrochloroquinine in July but I stopped after 3 months as was feeling terrible. I have progressed down the antibiotic route on my own accord with a private clinic but I seem to be herxing really badly as I have never had as much pain.

Lemons, yes I have a doctor, bw and a rheumatologist. Doctor is not well versed on RA but did write a letter complaint about my appointments with the NhS rheumatologist being cancelled. Thankfully I have an appointment next week.

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