Is this herxing?

[Mini]

I am a newcomer to AP and have been on it for about 6 weeks now. Immediately following the first dose, I had developed a severe headache and have continued to have headaches most days. It’s only been about a week now that I haven’t had a headache. Simultaneously, I also have been experiencing problems with my eyes. It started out as just minor puffiness/swelling on the eyelids (probably before beginning AP) and since then has progressed into pain and tightness in the eyeball, a feeling as if the eyeball is swollen or protruding out (may be the shape has changed), and vision feels a little more blurred than usual. I do wear eyeglasses currently, and I must say that I can still see fine with them. I should also mention that with rest my eyeballs don’t hurt as much.

On a minor level, I have also seen black discoloration on my toungue and gums. Is this something that is just cosmetic and will probably improve?

I would be grateful for any insights that anyone can provide. Thank you!

Best Regards,
Mini

[reesak]

Hi Mini – I, too, had severe headaches starting out on 100 mg of minocycline daily so I cut back to 50 mg MWF and eventually went to 50 mg daily and now over the course of about 6 months have increased to 100 mg daily and the headaches and dizziness have gone away completely. In fact, my head feels clearer now than it did before I started the minocycline. I also felt the pressure behind the eyeball feeling in the beginning and I do have some gray discoloration of my teeth.

You may want to cut down your dose of minocycline and start at a lower dose.

Good luck to you,

ReesaK

[lynnie_sydney]

@Mini wrote:

IOn a minor level, I have also seen black discoloration on my toungue and gums. Is this something that is just cosmetic and will probably improve?

I would be grateful for any insights that anyone can provide. Thank you!

Best Regards,
Mini

Mini – teeth discoloration around the gums is not uncommon. If you use the search function at the top of list of General Discussion topics and type in “teeth discoloration” alot of past discussion will come up. 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)

[Kim]

@Mini wrote:

I am a newcomer to AP and have been on it for about 6 weeks now. Immediately following the first dose, I had developed a severe headache and have continued to have headaches most days. It’s only been about a week now that I haven’t had a headache. Simultaneously, I also have been experiencing problems with my eyes. It started out as just minor puffiness/swelling on the eyelids (probably before beginning AP) and since then has progressed into pain and tightness in the eyeball, a feeling as if the eyeball is swollen or protruding out (may be the shape has changed), and vision feels a little more blurred than usual. I do wear eyeglasses currently, and I must say that I can still see fine with them. I should also mention that with rest my eyeballs don’t hurt as much.

On a minor level, I have also seen black discoloration on my toungue and gums. Is this something that is just cosmetic and will probably improve?

I would be grateful for any insights that anyone can provide. Thank you!

Best Regards,
Mini

Hi Mini, and welcome to the Roadback forum.

I’ve had the exact same eye pain you are referring to that has improved, although not entirely gone, with antibiotic treatment. Mine was a sharp pain behind my right eye (sometimes left) and intense eye pressure. Both RA and Scleroderma are connective tissue diseases so it could be related to the connective tissue around the eye. Neuro-Lyme can cause brain swelling resulting in the same eye pressure as well as ear pressure and headaches. It’s hard to know how to “label” symptoms. Once I realized I had a systemic infection(s) I gave up trying to treat symptoms and went full steam after the root infection, specifically Lyme. Eventually, all the symptoms improved, thank goodness. 😉

Take care…..kim

p.s. The dark discoloration around your teeth can usually be removed with a dental cleaning according to others that have had that problem.

[Mini]

Hello,

Thank you all for such super quick and helpful responses!

ReesaK – Adjusting the dosage is a great possibility to look into. I will contact my Rheumatologist’s office to check on that.

Kim – Thank you sharing your experince. It makes a difference to know that you are not alone in this. 🙂

The black discoloration that I have is actually on the tongue and gums and not on the teeth. Is this something that a dentist could address or a lower AP dose would help as ReesaK pointed out?

Best Regards,
Mini

[Maz]

@Mini wrote:

I am a newcomer to AP and have been on it for about 6 weeks now. Immediately following the first dose, I had developed a severe headache and have continued to have headaches most days. It’s only been about a week now that I haven’t had a headache. Simultaneously, I also have been experiencing problems with my eyes. It started out as just minor puffiness/swelling on the eyelids (probably before beginning AP) and since then has progressed into pain and tightness in the eyeball, a feeling as if the eyeball is swollen or protruding out (may be the shape has changed), and vision feels a little more blurred than usual. I do wear eyeglasses currently, and I must say that I can still see fine with them. I should also mention that with rest my eyeballs don’t hurt as much.

On a minor level, I have also seen black discoloration on my toungue and gums. Is this something that is just cosmetic and will probably improve?

Hi Mini,

Just wondering if you’ve had your thyroid tested lately? Thyroid problems can also cause puffiness/swelling of eyelids and eyeball protruding. My Mom had Grave’s disease, which causes exactly these symtpoms. Sometimes it also comes with excessive tearing and a grainy feeling in the eye. It’s a form of hyperthyroidism that can be corrected with thyroid meds. Sometimes there can be overlap with other AI diseases and, very often, autoimmune thyroid disease is involved with rheumatic diseases. Would it be worth having your thyroid levels and auto-antibodies checked to rule thyroid in or out?

The headaches some folk get with minocycline is usually transient and passes after a few weeks/months. We had a discussion about this on a thread a day or two ago that you might be able to find by scrolling back through the threads. It’s one of the reasons that AP docs will start patients on a low and slow dose, because vestibular symptoms (like motion sickness) can also be experienced, which also usually pass as the body adjusts.

Discoloration of the oral mucosa can be one of the side-effects of minocycline, as can be skin hyperpigmentation. I’m sort of wondering, though, if you can describe the patches on your tongue. Are they deep stains under the skin or is it more of a discoloration on the surface? Black hairy tongue is a possibility with the tetracyclines.

If the former, then some folk find that buffered Vit C can help to avert hyperpigmentation. If the latter, are you taking a good probiotic in adequate doses?

Okay…this pic on Wiki is kinda gross and they always seem to depict the “worse case scenarios” in medical pics, but this will give you an idea of what “black hairy tongue” can look like:

http://en.wikipedia.org/wiki/Black_hairy_tongue

It’s harmless and can be brushed away, but can be a precursor to candida issues, so very important to remain vigilant about probiotics.

[Mini]

@Maz wrote:

Hi Mini,

Just wondering if you’ve had your thyroid tested lately? Thyroid problems can also cause puffiness/swelling of eyelids and eyeball protruding. My Mom had Grave’s disease, which causes exactly these symtpoms. Sometimes it also comes with excessive tearing and a grainy feeling in the eye. It’s a form of hyperthyroidism that can be corrected with thyroid meds. Sometimes there can be overlap with other AI diseases and, very often, autoimmune thyroid disease is involved with rheumatic diseases. Would it be worth having your thyroid levels and auto-antibodies checked to rule thyroid in or out?

Discoloration of the oral mucosa can be one of the side-effects of minocycline, as can be skin hyperpigmentation. I’m sort of wondering, though, if you can describe the patches on your tongue. Are they deep stains under the skin or is it more of a discoloration on the surface? Black hairy tongue is a possibility with the tetracyclines.

If the former, then some folk find that buffered Vit C can help to avert hyperpigmentation. If the latter, are you taking a good probiotic in adequate doses?

Okay…this pic on Wiki is kinda gross and they always seem to depict the “worse case scenarios” in medical pics, but this will give you an idea of what “black hairy tongue” can look like:

http://en.wikipedia.org/wiki/Black_hairy_tongue

It’s harmless and can be brushed away, but can be a precursor to candida issues, so very important to remain vigilant about probiotics.

Hi Maz,

Thank you so much for your reply.

I don’t think that my thyroid has been tested lately, so will bring it up with the doctor on my next appointment.

As for my tongue discoloration, it doesn’t look like the one in the picture. It’s actually staining under the skin as you put it. In that case, what Vitamin C doses can be helpful? You have specifically mentioned the ‘Buffered Vitamin C’; does it work better than the regular vitamin C tablets you can find?

In terms of Probiotics, I am taking a brand called ‘primadophillus’ that contains acidophillus and bifidus. Each capsule contains 5 billion CFUs and I take 4 each day. I am wondering if that’s enough. I had tried taking 6 capsules a day earlier and found that it made me gassy so I cut down to 4. Perhaps I should try a different brand may be? Would you be able to provide any suggestions ? I would hate to run into issues with yeast. 😕

I really appreciate you and all other wonderful volunteers and the community in general to take the time to read posts from us newbies and provide direction. It makes so much of a difference to know that we are not in this alone. Thank you!

Best Regards,
Mini

[Maz]

@Mini wrote:

I don’t think that my thyroid has been tested lately, so will bring it up with the doctor on my next appointment.

As for my tongue discoloration, it doesn’t look like the one in the picture. It’s actually staining under the skin as you put it. In that case, what Vitamin C doses can be helpful? You have specifically mentioned the ‘Buffered Vitamin C’; does it work better than the regular vitamin C tablets you can find?

In terms of Probiotics, I am taking a brand called ‘primadophillus’ that contains acidophillus and bifidus. Each capsule contains 5 billion CFUs and I take 4 each day. I am wondering if that’s enough. I had tried taking 6 capsules a day earlier and found that it made me gassy so I cut down to 4. Perhaps I should try a different brand may be? Would you be able to provide any suggestions ? I would hate to run into issues with yeast. 😕

Hi Mini,

One thing is for sure – you’re not alone in any of this. We’re all here and will support you on your way. Sometimes we don’t have all the answers, but we sure do understand how you feel. 😉

Yes, it’s just smart to keep an eye on thyroid when one has a rheumatic disease, reason being that, if it’s affected and out of balance, it can also mimic the aches and pains of arthritis. I think I read a statistic in my Thyroid reference book that up to 25% of RAers will experience some form of overlapping thyroid disorder, so it’s pretty common…nothing to worry about, though, as it’s one of those things that many folk get as they get older.

There is info on the main site about the value of Vit C to help avert the hyperpigmentation that some folk can get with minocycline. See section on “side-effects”:

https://www.roadback.org/index.cfm?fuseaction=studies.display&display_id=183

There’s different kinds of hyperpigmentation that can occur with minocycline…sometimes the skin will get an all over California tan-like look (I loved mine as I’m fair-skinned and always go red and peel before I get a bland tan! 😆 ), or less cosmetically nice, folk can sometimes get the blue/gray patches that look a bit like bruises or freckles. I have seen some research on biopsies they did of these blue/black patches (I think it was done in UK and I posted it a couple years ago here on the forum) and the patches were found to be entirely benign, but containing high levels of iron. This would make good sense, because the tetracyclines are highly chelative, meaning they bind to minerals in the body. This is why tetracyclines can be found in bones (see article in new eBulletin about Ancient Nubian bones), because bones are so rich in minerals, like calcium. It’s also why one mustn’t take their minocycline with food or supps rich in minerals, but to leave a good window of time from the dose, because the tetra will bind to the minerals in the gut and render the antibiotic useless.

Actually, if you have the Scammell book, near the end, it shares NIH trials that were done on rodents with minocycline and it was found that minocycline causes T-cells to take up too much calcium, causing them to malfunction…this is thought to be one of the helpful immune-modulating props of tetras! 🙂

It makes sense that Vit C would be useful in preventing this blue-gray hyperpigmentation, because the blood is rich in iron and Vit C is needed by the body to properly absorb and metabolize iron for hemaglobin (and to prevent anemia):

http://www.livestrong.com/article/195055-does-vitamin-c-increase-iron-absorption/

Just a sidebar note: It’s questionable if Vit C is helpful or harmful for scleroderma patients, because Vit C is thought to promote collagen production in the body. Opinion on this varies, though, and would suggest folk talk to their doctor and do their own research before deciding what feels right for them.

The reason that “buffered” Vit C is better than regular Vit C is because it is protective to the stomach. Vit C is quite acidic and, for the rheumatic, in particular, who may already be taking pain meds that damage the stomach lining, a buffered variety of Vit C would help prevent any further irritation. I usually use a Vit C brand that is buffered with Rosehips, but others here may have further suggestions for you, Mini. The dose I took daily (spaced apart by two hours from my antibiotics, as I have done with all supps) was 1000mg. Some people say it’s okay to take up to 2000mg Vit C, but I always err on the side of moderation with supps.

I’m a little surprised that you’re experiencing hyperpigmentation so quickly, just six weeks in, Mini. Usually, it’s something that occurs with longer-term use, but I guess anything is possible and everyone is unique. 😉

The people who seem to experience the skin bruising (looks like bruises, but is just discoloration) sometimes say they bumped themselves and then the bruise never went away. This would make sense, too, because when we bruise ourselves, blood rushes to the scene. If this blood is rich in minocycline, which is chelative, it will probably deposit iron in those areas that will keep it looking blue/gray/black. It is purely cosmetic, so most people just ignore it or, if on the face or somewhere obvious that is uncomfortable, they’ll switch out to doxycycline. All the tetras will produce some type of hyperpigmentation upon sun exposure, though. I’ve been on tetracycline and doxycycline and I’m a sun-lover. With both, I got conjoined freckly patches that were a brownish/gray color on my forearms…but it always fades during winter time and just melds in with my tan. A good sun-block, hat or sitting under and umbrella, will help avert hyperpigmentation and also help to prevent sun-sensitivity, which can feel like a stinging sensation on the skin when out in it for too long.

I spoke to an APer out in India who was also getting the blue/black patches in his oral mucosa. He was fine with it, as the minocycline was working so effectively for his psoriatic arthritis. Not everyone is, though, so it’s really about your own personal comfort zone. It does gradually go away when the mino is switched out to one of the other tetras.

Everyone seems to have their own favorite brand of probiotics and what they feel works best for them. I’ve been taking PB8 vegetarian capsules for the past 4 years (8 to 10 caps per day, which is 4 to 5 times the recommended daily dose) and haven’t had any problems with candida or gastric upset, even though I’ve been on heavy Lyme protocols. This one seems to work well for me, although we did have a discussion on another thread recently about probiotic brands and we all pretty much came to the conclusion that the best way to ensure one one was getting full coverage was probably to rotate probiotics regularly or to take 2 or 3 good brands simultaneously. If you use the search box above, just type in “probiotic brands,” and there should be a plethora of discussion threads that pop up where people have shared what has worked for them. I actually started my probiotics low and slow, as I wasn’t sure, in the beginning, how much I should take and what would be sufficient. Too much in the way of probiotic might cause constipation and too little can result in diarrhea from not enough coverage. So, I increased the dose every week by one or two caps to find my optimal dose. A healthy gut should be producing (sorry to be graphic) 2 or 3 stools a day that are medium brown in color and solid. Fluffy, loose stools are a sign of malabsorption and probably not enough probiotic. A stool that is darker in color and hard to pass is constipation and one probably isn’t getting enough fiber or is dehydrated….not that I’m a stool expert or anything! 😆 Gassiness can mean a lot of things…candida, too much fat in the diet, malabsorption…possibly also increasing the probiotic dose too quickly. So, it’s all a bit of a learning curve and very individual, as most things tend to be.

Hope something here is of help, Mini?

[Mini]

@Maz wrote:

Hi Mini,

One thing is for sure – you’re not alone in any of this. We’re all here and will support you on your way. Sometimes we don’t have all the answers, but we sure do understand how you feel. 😉

Yes, it’s just smart to keep an eye on thyroid when one has a rheumatic disease, reason being that, if it’s affected and out of balance, it can also mimic the aches and pains of arthritis. I think I read a statistic in my Thyroid reference book that up to 25% of RAers will experience some form of overlapping thyroid disorder, so it’s pretty common…nothing to worry about, though, as it’s one of those things that many folk get as they get older.

There is info on the main site about the value of Vit C to help avert the hyperpigmentation that some folk can get with minocycline. See section on “side-effects”:

https://www.roadback.org/index.cfm?fuseaction=studies.display&display_id=183

It makes sense that Vit C would be useful in preventing this blue-gray hyperpigmentation, because the blood is rich in iron and Vit C is needed by the body to properly absorb and metabolize iron for hemaglobin (and to prevent anemia):

http://www.livestrong.com/article/195055-does-vitamin-c-increase-iron-absorption/

The reason that “buffered” Vit C is better than regular Vit C is because it is protective to the stomach. Vit C is quite acidic and, for the rheumatic, in particular, who may already be taking pain meds that damage the stomach lining, a buffered variety of Vit C would help prevent any further irritation. I usually use a Vit C brand that is buffered with Rosehips, but others here may have further suggestions for you, Mini. The dose I took daily (spaced apart by two hours from my antibiotics, as I have done with all supps) was 1000mg. Some people say it’s okay to take up to 2000mg Vit C, but I always err on the side of moderation with supps.

I’m a little surprised that you’re experiencing hyperpigmentation so quickly, just six weeks in, Mini. Usually, it’s something that occurs with longer-term use, but I guess anything is possible and everyone is unique. 😉

Everyone seems to have their own favorite brand of probiotics and what they feel works best for them. I’ve been taking PB8 vegetarian capsules for the past 4 years (8 to 10 caps per day, which is 4 to 5 times the recommended daily dose) and haven’t had any problems with candida or gastric upset, even though I’ve been on heavy Lyme protocols. This one seems to work well for me, although we did have a discussion on another thread recently about probiotic brands and we all pretty much came to the conclusion that the best way to ensure one one was getting full coverage was probably to rotate probiotics regularly or to take 2 or 3 good brands simultaneously. If you use the search box above, just type in “probiotic brands,” and there should be a plethora of discussion threads that pop up where people have shared what has worked for them. I actually started my probiotics low and slow, as I wasn’t sure, in the beginning, how much I should take and what would be sufficient. Too much in the way of probiotic might cause constipation and too little can result in diarrhea from not enough coverage. So, I increased the dose every week by one or two caps to find my optimal dose. A healthy gut should be producing (sorry to be graphic) 2 or 3 stools a day that are medium brown in color and solid. Fluffy, loose stools are a sign of malabsorption and probably not enough probiotic. A stool that is darker in color and hard to pass is constipation and one probably isn’t getting enough fiber or is dehydrated….not that I’m a stool expert or anything! 😆 Gassiness can mean a lot of things…candida, too much fat in the diet, malabsorption…possibly also increasing the probiotic dose too quickly. So, it’s all a bit of a learning curve and very individual, as most things tend to be.

Hope something here is of help, Mini?

Hi Maz,

You are too kind! It’s becasue of volunteers such as yourself that this board has come to be a warm, compassionate and supporting venue, that can be an incredibly valuable resource for us newbies and veterans alike! So, thank you for being there!

Before I registered on the board, I just used to be a reader and always enjoyed reading your responses that were very informative and thorough. And, this one is no different. 🙂

Thank you for providing all the links and extremely useful suggestions and strategies regarding supplementation. All this information makes things a lot clearer for me. I will also contact my Rheumatologists office to explore a lower AP dose as the hyperprigmentation had occurred within a couple of weeks in my case. You also mentioned that gassiness could indicate Candida; when I think about it I only developed gassiness when I started having joint pains. I wonder if there is a connection here and how I can get tested for candida. I will run a search on the board.

Thanks once again and have a wonderful holiday season ahead!

Best Regards,
Mini

[Author]

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