- This topic has 18 replies, 9 voices, and was last updated 4 years, 10 months ago by
.
-
Posts
-
Hello everyone, can anyone please tell me if there is a link to eye/vision problems taking minocycline, specifically occular hypertension or narrow angles in the eyes? I have been taking minocycline 150 mg daily for over 2 years for Scleroderma and am very pleased with how much it has helped me, but recently I have been diagnosed with narrow angles in my eyes which can lead to glaucoma. I sometimes feel random eye pain, light sensitivity, blurred vision, and eye dryness. My opthamologist wants to correct the problem using lasers. I understand that I am older now ( I am 52 years old ) but I’ve never had eye problems whatsoever in the past. Has anyone had a similar experience while taking minocycline? Thanks in advance. 🙂
-AnnetteMy daughter doesn’t take Mino so I don’t know if it can cause the symptoms you mentioned but I do that it isn’t well known that Hashimoto’s can affect your eyes and cause some of the symptoms you mentioned. It is well known that Graves causes eye issues but Hashimoto’s can also affect your eyes. I’m sure you have had your thyroid antibodies checked but in case it’s been a while I would specifically ask for the antibodies to be tested to rule out Hashimoto’s Thyroiditis. Even if your T4 and TSH look good you can still have the autoimmune. It sometimes takes years before it shows up on the standard test. The only way to know if your immune system is attacking your thyroid is by measuring the antibodies. If you have Hashimoto’s Thyroiditis then you may be in a flare and it may be affecting your eyes.
I have hashi’s and eye problems. they seem correlated and started before taking the mino.
it’s interesting that you’re on 150mg 2x daily rather than the more typical dose for SD of 100mg 2x daily. is there a particular reason your doc has you on that dose? very glad to hear it’s effective for you, just curious!
Autoimmune: ANA positive speckled. Probable MCTD with SD overlap. Hashimoto's. Possible Erlos Danlos. Mold Illness.
Infections: Bartonella, toxoplasmosis, mycoplasma, EBV
Meds: minocycline (Zydus generic) 100mg 1x daily,
Supps: digestive enzymes, Monolaurin, Betaine hydrochloric acid, iron, quercetin, biocidinThank you both for responding. I have hypothyroidism for many years, I will definitely ask my endocrinologist about Hashimoto’s. I’ve been taking 150mg minocycline because for some reason taking the 200mg daily creates breathing difficulty for me. Every time I try to up the dose the same issue happens, its so strange. I don’t have an AP doctor for guidance so I’m kinda going it alone with the antibiotic therapy. I weigh about 110 pounds so I hope that 150mg daily is an effective enough dose. Thank you both for the information, I greatly appreciate your help. 🙂
Hi Annette,
You may want to try doxycycline instead of minocycline to see if it works for you without causing other problems. Compared to mino, doxy has fewer side effects. Also, are you taking any vitamin C?
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einsteinwell Anette said she was feeling good on the mino so I wouldn’t tell her to go changing drugs, especially when you’re up against something as serious as scleroderma.
Anette my original diagnosis was hypothyroid and then recently a doctor ran rests for antibodies that did indicate hashi’s. not really a surprise to see hashimotos in people with other autoimmune disease.
not saying that a positive diagnosis there would necessarily explain the cause of your eye problems either, just that it could be a cause.
I understand about going it mostly alone with AP. that’s what I’ve had to do as well.
I don’t think ive seen anybody complain of eye issues on here that have been caused by minocycline. but when I Google “minocycline” and “eyes” there are a few hits about it possibly effecting eyes by affecting the blood vessels or the pressure in your head.
probably warrants further investigation!
Autoimmune: ANA positive speckled. Probable MCTD with SD overlap. Hashimoto's. Possible Erlos Danlos. Mold Illness.
Infections: Bartonella, toxoplasmosis, mycoplasma, EBV
Meds: minocycline (Zydus generic) 100mg 1x daily,
Supps: digestive enzymes, Monolaurin, Betaine hydrochloric acid, iron, quercetin, biocidinwell Anette said she was feeling good on the mino so I wouldn’t tell her to go changing drugs, especially when you’re up against something as serious as scleroderma.
Minocycline is known to cause autoimmune conditions in some people, and it appears that thyroiditis may be one of them. Also, at least one of those autoimmune conditions affect the lungs.
See:
Drug-induced thyroiditis and papillary carcinoma in a minocycline-pigmented black thyroid gland.
https://www.ncbi.nlm.nih.gov/pubmed/18631011Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinThank you all for the helpful advice.. so much to think about, I get so confused, sometimes, the more I learn. I really wish I had a good AP doctor to guide me through treatment. I am so grateful for all the advice and information given by everyone here. 🙂 Phil, in response to your question about taking vitamin C: Before being diagnosed with scleroderma I took a lot of vitamin C daily, but since then I read vitamin C causes collagen build up so now I try not to have much vitamin C. I’m not sure if that’s a good thing or not, but I would like to continue taking it if it’s safe to do so.
Hi Annette,
There is no scientific evidence that supplementing with vitamin C is harmful to people with scleroderma (I’ve looked). As far as I can tell, any statements that vitamin C supplementation might be harmful to scleroderma patients are purely speculative. Even so, recommendations that people with scleroderma should avoid taking high doses of vitamin C do seem reasonable.
“Patients should be cautioned about consuming large doses of vitamin C (>1,000 mg/day) due to its potential to stimulate collagen formation and enhance its deposition.”
Source:
Scleroderma: Managing Systemic Sclerosis and Its Complications
http://www.uspharmacist.com/content/d/featured%20articles/c/33686/See also:
Scleroderma and vitamins C, E
https://www.roadback.org/forums/topic/scleroderma-and-vitamins-c-e/Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinElevated (swollen) optic nerves were the first sign my daughter had developed pseudotumor cerebri from minocycline. The headaches came later. The pressure on her brain was pushing on her eyes. I would rule out that side effect before laser surgery or anything for the symptoms you are having. Your eyes will return to normal if it is coming from minocycline and you discontinue it.
Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.
If you do have this side effect, it is not recommended to switch doxycycline because it can possibly cause the same side effect.
Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.
Thank you Suzanne and PhilC for the very helpful advice.
– PhilC, I’m glad to hear that about the vitamin C because I know taking it is very important to help strengthen immunity.
– Suzanne, I googled some info on the symptoms of pseudotumor cerebri and noticed ringing in the ears was a symptom I have had for many months now. I’ve been wondering why I suddenly have been experiencing it, as well as, something causing a decrease in hearing like as if my ears were clogged. I did speak with my GP about it many many months ago but I always felt like he just blew off my concerns about it. I now have a new GP and I am going to talk with him and a new opthamologist about the possibilities of pseudotumor cerebri and any problems with taking minocycline for long period of time. I hope your daughter is well and feeling much better. 🙂 Thank you both again. 🙂Interesting. I have been on mino since fall 2011. Now on a maintenance dose. My eye pressure has been a bit high and has come down using drops. I am surprised they are suggesting surgery as usually the drops are the first level of action but perhaps the pressure is very high ? My eye doc has not said anything about mino so I will have to research more also. I notice my eyes a bit blurry recently and was going to get eye exam. I am leary to go off the mino totally due to having SD and the amount of people mentioning losing remission. Thanks for posting.
Systemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, CHi sorry to hear of your symptoms. My husband has been on 200mg Minocycline alternate days and was also on Sulfasalazine 2000mg a day for severe RA for nearly three years. At around the end of the 2nd year he developed raised Intraoccular pressure and episcleritis, inflammation of the sclera. He went straight to an opthalmologist who gave him steroid drops and one other one that was new. I cant remember the name of it. The Opthalmologist didnt think it was a side effect of the drugs. After a few months it settled down and he is fine now. We dont know whether it was either of the drugs or the disease. I also started him on Lutein and Zeaxanthin. Tablets which are useful for eye health. Both of the drugs he was on had side effects that could have ben the cause. He was also still on oral Prednisone which can also cause raised intraoccular pressure. He went of the oral Prednisone and reduced the Sulfasalzine to 1500 mg a day. He has been on this regime now for maybe a year and so far he has no symptoms of RA and his RS was 39 a few months ago which is still coming down from over 600 when he was first diagnosed. I think you are wise to get checked for the other side effect mentioned above and also maybe try taking it alternate days. And take lots of Probiotics.
– Suzanne, I googled some info on the symptoms of pseudotumor cerebri and noticed ringing in the ears was a symptom I have had for many months now. I’ve been wondering why I suddenly have been experiencing it, as well as, something causing a decrease in hearing like as if my ears were clogged. I did speak with my GP about it many many months ago but I always felt like he just blew off my concerns about it. I now have a new GP and I am going to talk with him and a new opthamologist about the possibilities of pseudotumor cerebri and any problems with taking minocycline for long period of time. I hope your daughter is well and feeling much better. />
Annette, my daughter would also complain of her ears ringing but since that is side effect of azithromycin (which she also took with minocycline), I never associated it with pseudotumor cerebri. It never bothers her anymore and she is still on azithromycin, so that is interesting to consider.
My daughter fully recovered after stopping minocycline. They monitored her optic nerves for several months and we could see things steadily improving until everything was back to normal. That is the best thing about minocycline – we were told even by non-AP rheumatologists that the side effects are drug-induced and will resolve when the drug is discontinued.
Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.
You must be logged in to reply to this topic.