extreme sun sensitivity

[BarbW]

I have been on mino for SD for 27 months (100mg 2X/day), and am doing really well as far as the SD is concerned. But, the sun sensitivity has become unbearable. There isn’t enough sunscreen or clothing that seems to help. Today I applied spf 60 and wore a long sleeved shirt that was rated spf 50 and I just went out in the car to go to the grocery store. I wasn’t outside for more than 10 minutes total and my arms feel like they are on fire. It will probably last for days.
I talked to a dermatologist about this and he advised me on the most effective sunscreens, which I was already using, and suggested that I adjust the time of dose to try to avoid the highest concentration being in my system during the middle of the day. I did that, but it obviously has not helped.
Has anyone else had experience with this extreme sun sensitivity?

[richie]

Hi–It happens often because of the antibiotic –In fact your pharmacist should have attached a warning label –about sun sensitivity —
richie

[BarbW]

Of course I knew I would have sun sensitivity. But, I thought that wearing heavy sunscreen and long sleeves and not spending any significant time in the sun would protect me. This is WAY beyond that. I am trapped inside. Any ideas?

[PhilC]

Hi Barb,

How long have you had this problem? Are you taking any other medications?

Phil

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

[Rosemary Perth Aust.]

Barb I had the same problem. It is so painful, however it may not the antibiotic, but a lack of Vit D.
Ended up I needed 5000mg per day before the pain stopped. It is important to have a small
amount of sun a day avoiding the worst part of the day. You need both forms. Not sure how long it will take you to
recover but not long. Still taking them years later and no problems in that area any more. There are
other theories on this where Vit D is avoided even in food The Marshall Protocol. Taking the tabs was simpler for me.
You have a choice.

[BarbW]

Phil – Naproxen, lisinopril, protonix – a fraction of the drugs and dosages I was on before AP. Also supplement folic acid/b6/b12 combo, calcium/mag/vit D + extra D (1000/day), milk thistle, biotin, coq10.

Rosemary – endocrinologist has me supplementing D3. Earlier this spring I was taking 50K IU per week, but that made me really tired so I quit that. For the past 3 weeks I have been doing 1K IU per day in addition to the 200 in the calcium combo on most days. This thing has been getting worse, so I think I will stop the extra D and see if that helps. Thanks for reaching out. The pain is unbelieveable – but I guess you know that.

[BarbW]

Oh, and one more piece of info. Last D25 test about a month ago showed serum D at 35.9 – not terribly low.

[Suzanne]

Barb,

You might also look into polymorhous light eruption (PMLE). It is a sun allergy, which is why sunscreens don’t help.

My daughter developed this while on Plaquenil. She did not complain of pain, although the affected areas would be bright red. She said it itched, though, and was very uncomfortable. She would sometimes peel, as if she had a serious sunburn.

It was very hard to figure out what was going on. I would think I hadn’t applied the sunscreen properly, or it was out of date, or she was reacting to a chemical in the sunscreen…..she suffered a lot before we figured it out, and I spent a fortune on various sunscreens. It hasn’t happened since she stopped taking Plaquenil.

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[Rosemary Perth Aust.]

Barb I am so sorry I ommitted the 3 – D3
FIRST thing to do is be tested to see if you are deficient. That way you will determine if it is a deficiency or something else. Most of us suffer a great deal of pain.
What I was experiencing was agony. Quite frightening. Not the usual from taking the drugs. I am still in a lot of pain especially when I take something different, however things are improving.
Not everyone is the same and this is important. Had to add everything in very small doses. There are others on the 5000 U
as well so I was not concerned, as on a huge amount of antibiotic treatment. When I reached the 5th I knew immediately. -You have no idea how wonderful it is to actually be able to go out in the sun now or to the line or garden. It was exciting. Do Hope you test for it. Some patients have extremely low levels.
Hope you sort it out soon

[PhilC]

Hi Barb,
@BarbW wrote:

Phil – Naproxen, lisinopril, protonix – a fraction of the drugs and dosages I was on before AP.

Both naproxen and lisinopril can cause an increased sensitivity to sunlight. Consider asking your doctor to switch you from naproxen to a different NSAID, one which is not in the propionic acid class. Although it appears that sun sensitivity can be a problem with most (all?) NSAIDs, those in the propionic acid class are more likely to cause this problem. Besides naproxen, ibuprofen is another common NSAID in this class. If switching to a different NSAID doesn’t help, then a reasonable next step would be to consider alternatives to lisinopril.

By the way, a research paper relevant to this topic was recently published:
Exposure to phototoxic NSAIDs and quinolones is associated with an increased risk of melanoma.

Phil

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

[BarbW]

Rosemary,
As I said above, I was recently tested for D and my serum D was 35.9, not terribly low. What was yours when tested?

Thanks,
Barb

[enzed]

And here’s a study published in Pubmed that says something different…. 😕

QUOTE
Long-term use of nonsteroidal anti-inflammatory drugs decreases the risk of cutaneous melanoma: results of a United States case-control study.
Curiel-Lewandrowski C, Nijsten T, Gomez ML, Hollestein LM, Atkins MB, Stern RS.
Source

Department of Dermatology, BIDMC, Harvard Medical School, Boston, Massachusetts, USA. ccuriel@azcc.arizona.edu
Abstract

Experimental and observational studies continue to demonstrate conflicting results regarding the role of several commonly used drugs as melanoma chemopreventive agents. This case-control study was designed to assess the associations between cutaneous melanoma (CM) and exposure to nonsteroidal anti-inflammatory drugs (NSAIDs) and statins in current users. A total of 400 CM and 600 eligible age- and gender-matched community-based controls were prospectively recruited and interviewed. We assessed participants’ demographic characteristics, CM risk factors, and current and previous use of medications. Multivariable conditional logistic regression models were used to estimate adjusted odds ratios (ORs) and 95% confidence intervals (CIs) for associations between NSAIDs and/or aspirin (ASA), statin exposure, and CM risk. Half of the subjects were men (mean age 60 years). After adjusting for confounders, use of any type of NSAIDs for more than 5 years significantly reduced the risk of melanoma development compared with the low-exposure group (adjusted OR=0.57; 95% CI=0.43-0.77). Subgroup analyses showed that the observed risk reduction was primarily driven by continuous ASA use (>5 years adjusted OR=0.51, 95% CI=0.35-0.75). No significant protective effect was observed with statin exposure (OR=0.97, 95% CI=0.73-1.29). Long-term use of NSAIDs, especially ASA, is associated with a significantly decreased risk of CM development. Clinical intervention studies are warranted to further investigate the potential role of ASA and other NSAIDs as chemopreventive agents for CM.
END OF QUOTE

[PhilC]

@enzed wrote:

And here’s a study published in Pubmed that says something different…. 😕

Long-term use of nonsteroidal anti-inflammatory drugs decreases the risk of cutaneous melanoma: results of a United States case-control study.
Curiel-Lewandrowski C, Nijsten T, Gomez ML, Hollestein LM, Atkins MB, Stern RS.
Department of Dermatology, BIDMC, Harvard Medical School, Boston, Massachusetts, USA. ccuriel@azcc.arizona.edu

Not really. That research study apparently looked at NSAIDs as whole. In the study I cited, they did not find that all NSAIDs increase the risk of cutaneous melanoma, only those in the propionic acid class.

Phil

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

[Rosemary Perth Aust.]

Please forgive me Barb, I am getting ready for surgery and did not see you levels. Don’t know how I missed it except I am
rushing constantly. Cannot bear to see anyone in a lot of pain & do nothing. Do hope you find out what it is and fast.
With a level like you have it is hardly a D deficiency however, take notice of what others have said about other drugs being
the culprit. It is all trial and error that’s for sure. I never used Planquile so cannot comment on that. Never had any reaction to the Vit D3 either except the usual when getting the dose up. Sometimes you just feel like you are going round in circles. This information on the board is invaluable to all of us.

[enzed]

@PhilC wrote:

@enzed wrote:

And here’s a study published in Pubmed that says something different…. 😕

Long-term use of nonsteroidal anti-inflammatory drugs decreases the risk of cutaneous melanoma: results of a United States case-control study.
Curiel-Lewandrowski C, Nijsten T, Gomez ML, Hollestein LM, Atkins MB, Stern RS.
Department of Dermatology, BIDMC, Harvard Medical School, Boston, Massachusetts, USA. ccuriel@azcc.arizona.edu

Not really. That research study apparently looked at NSAIDs as whole. In the study I cited, they did not find that all NSAIDs increase the risk of cutaneous melanoma, only those in the propionic acid class.

Phil

Hi Phil,
I’ve been on Bruffen for many years. I looked it up to find it is in the propionic class. Can you please suggest one I could switch to? I can’t do without an anti-inflamatory – whenever I have come off it as I have at times, I am soon in so much pain I’ve had to start taking it again. I’m sure my doctor will switch me to another if I ask.
Thanks.

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