Red dots... is anyone on medication for them?

[Kc_1411]

Hey all I know I have previously spoke about the red dots (t) can’t spell it sorry

Has anyone been offered any medication for them???

Thanks all

[LucyJean]

Hello there, are you referring to the telangi that you can see on faces, lips, hands, and pretty much anywhere else? As well as the ones on the inside that you can't see of course!

If you are there is not a medication that I am aware of. They are a part of the disease process. They are inflammation of the blood vessels...spider veins. If your disease is treated with immunosuppression therapy or controlled by whatever medical means then they might be better controlled. If they are prominent or unsightly or bleed regularly then they are sometimes treated with laser therapy.

All my best

Lucy xxx

[Kc_1411 in reply to LucyJean]

Thanks Lucy, yes this is what I mean... feel like I need to do something my husband is getting worse and worse not on any meds and I’m literally begging him to take something his answer is nothing can stop this from happening to me.

Sorry for rant just don’t know where to turn what to do it’s a very hard situation.

Thanks anyway xxx

[LucyJean in reply to Kc_1411]

Gosh, that is such a difficult situation for you. I don't know anything of his treatment history, so he may have tried a number of medications but, it is not true that there is nothing he can do to stop it. Presumably he has seen a decent specialist and talked through the options with them??? Would he listen to someone who has it? I am assuming he is not the type of person who might engage with the SRUK helpline?

Feeling for you.

Lxxx

[Kc_1411]

Was diagnosed at 12 on methotrexate stopped around 6yrs ago has been on nothing since maybe on / off sidenifil, now 28yrs old. Went to his last app at royal free hoping for some answers but just told to try a new medication. He’s had a tough time some bad family news so unfortunately missed the last appointment, so I’m trying to organise another one ASAp.

No he wouldn’t speak to anyone as he try’s to act as if he has no illness, doesn’t want to think about it.

Do u have scleroderma if so what do u find works for u?

Thanks xx

[LucyJean in reply to Kc_1411]

Hi again, yes, I do have scleroderma. I have been diagnosed since 2004, but have had problems since before that. I also have inflammatory arthritis and other overlaps with lupus. Autoimmune conditions can bring a mixed bag of symptoms. Your husband is clearly with a specialist hospital so they should have all the information and access to the latest treatments for him. There are many more immunosuppressants than MTX that he could try and may have good success with. Mycophenolate to name one. There are also other biologic agents such as Rituximab for example. I would be surprised if they had not offered him other options. I wonder why he doesn't want to try other things?

It is quite natural for people with autoimmune conditions like scleroderma to have flares of conditions if they are going through stressful life situations. The immune system tends to respond and become overactive when we are stressed. Sometimes the condition can settle a little when life is more settled. It is important though that he get his symptoms under better control. Are you able to discuss the situation yourself with the specialist nurses in the Royal Free...or does your husband have an appointment coming up that he would agree to you attending with him?

I also understand where he is mentally with it. When I was first diagnosed I was really peed off that this had happened and I just wanted it gone and to get on with my life. I pretended like I didn't have it and pushed on regardless, but my body would not let me do that for long and over the years I have found some better ways to accept the situation and work with it rather than against it. I am not sure what the answer is, you may need to let him find his own path in his own time, frustrating as that may be for you. I imagine he is terrified of what might happen and denial and blocking it out is how he is managing to cope even though in the long term it is not really a helpful strategy, it possibly feels protective to him right now.

Hugs

Lxxx

[Kc_1411 in reply to LucyJean]

Thanks Lucy,

I did mention at last appointment he would like to try something in terms of meds and they said after the lung function test they will speak about this. He has since said he will try to shut me up. He doesn’t take anything because he believes his organs will be affected, which maybe true.

Sorry to hear u have so much to deal with stay strong and I pray for all there will be a cure xxxxx

[LucyJean in reply to Kc_1411]

Hey hon, I don't like to say things that might worry you, but I have to say with having scleroderma his organs are more likely to be affected by the disease itself than any of the medications he would take. All immunosuppressants are carefully monitored with regular blood tests so any impact on his liver and kidneys, which is the two organs that would be predominantly affected, would be spotted at early stages and the drugs would be stopped straight away.

I completely understand his reticence to take any medications. They are not anything you would ever want to take by choice but often they can make a significant difference to the disease...after all the overall aim is to improve quality of life not reduce it.

Hugs

Lxxxx

[Kc_1411 in reply to LucyJean]

I totally agree hun this is my point they are there to help. Anyway I will see at his next appointment what’s offered and how he takes it... thank you for all advice. I have a doctors letter I will pull out later and if u can help me understand it I would be very great ful as the terminology is medically written I can’t make sense of it XXxx

[Kc_1411 in reply to LucyJean]

Hey Managed to pull the letter up can you make sense of this??

Organ suraveillance with normal echocardiogram and pulmonary function tests (FVC 69.7%, FEV1 71.7%, DLCO 57.7%, KCO 72.85%)

No worries if no one knows I was just curious

Have a good day everyone xxxx

[LucyJean in reply to Kc_1411]

Hi there, I had a little hunt to see if there was anything online that would explain these concepts better than I could. I found this excellent PDF that had what seemed really comprehensive information. I hope it makes sense to you and helps.

alphanetbfrg.org/pdfs/Under...

The DLCO measures the ability of the lungs to transfer gas from inhaled air to the red blood cells in pulmonary capillaries. It’s to see how well your lungs are able to take up oxygen from the air you breathe. It is also called the TLCO I think. KCO is a measure of the efficiency of alveolar (the little sacs in your lungs) transfer of carbon monoxide. In most of the above tests they are looking for about 85% and above to be normal I think. I am definitely not an expert in this area, so please discuss it with an expert, but I hope my basic info helps a bit. From what I can see there is an issue with his lungs ability to transfer oxygen. I have the same issue. Mine is also about 55-58%.

A normal echocardiogram for the heart is what it says on the tin...normal Which is excellent news.

Hugs

Lxxx

[Kc_1411 in reply to LucyJean]

Thanks Lucy you have been great help... I would have been pulling my hair out if It wasn’t for this site xxxx

[Maryjcl]

Hi, I have a lot on my face now and on the inside of my lip, not on any medication for it though xx

[FlyJesus58 in reply to Maryjcl]

You can rinse with mouthwash with alcohol or hydrogen peroxide, just don't swallow

[Kc_1411 in reply to Maryjcl]

Do you take anything for the scelroderma?

[Maryjcl in reply to Kc_1411]

Hi KC, yes I am on mycophenolate for the scleroderma xx

[Kc_1411 in reply to Maryjcl]

What benefits do u find from this medication?

[Maryjcl in reply to Kc_1411]

My skin looks and feels a lot better since taking the medication also my pain is not as bad as it was, it also helps with internal organs, hopefully xx

[Kc_1411 in reply to Maryjcl]

Glad to hear it hun... great news... do u have any side effects? Sorry last question xx

[Maryjcl in reply to Kc_1411]

Haha ask away, no problem. No I haven’t had any side effects, think I have been lucky xx

[FlyJesus58]

I just noticed these red dots on my legs today, they cluster in different areas. I counted 4 areas, I've been using Betamethasone Valerate ointment usp, 0.1% made by Fougerd for a different issue as I have itching skin in different areas. I feel all of us have so many medical issues because of Chem-Trails, here in the USA they spray our skies with metal barium and other junk which eventually rains down on us.

[GGhere]

Hello Kc

I've had the dots for several years now. The ones on my face are the most annoying. They began 4-5 years ago initially just on my feet then they appeared on my legs and seemed to have a "flare up" now and then when my legs were practically covered in them and they were very red and came up from my feet and above the knees. Since being diagnosed I now take an immune suppressant drug called hydroxychloroquine and the red spots on my legs have faded to brown and look like I have a good tan. I still get red dots on my face which come and go - I got up this morning and there are lots of them sometimes it's only a few. The medical term for the red dots is ​Telangiectasia.

I understand that this is a difficult disease to diagnose, my GP told me he's not seen it before and though I kept turning up with various symptoms it was about 3 years before anyone got to the bottom of things. Once I was referred to the rheumatology dept at the hospital things were explained, they gave me literature to read and of course the appropriate drugs. I've not been given any medication specifically for the red dots. I suspect these mysterious spots are something we have to put up with. I hope you both manage to come to terms with everything and learn to worry less. My philosophy now is enjoy the good days and put the bad ones behind you once they're over. Take care.

[kel55 in reply to GGhere]

hi, l have them inbetween my fingers and up my arm following the path of my arteries. them itch like crazy! and they are raw when they split. I have found that a nitrate cream is better when they really flare up but for just normal times l use one for exsma (if not speltcorrectly at least you can read it😁)

[Kc_1411 in reply to GGhere]

Thanks for your advice hun, it’s just heartbreaking to see him getting worse and worse. It’s not only the red dots his health overall is bad and it’s difficult more because he takes no medication and has this no medication will help I’m fine as I am attitude. I am trying to convince him to atleast try he is so young and has a lot to live for, I know it’s easy for me to say because I’m not suffering.

I’m hoping after further checks at next appointment he will also be on the same med as you and it has some benifit to him.

Thank you xxx

[SherrySanford65]

I assume you’re referring to telangiectasia. I’m not aware of any medication that get rid of them. Maybe laser therapy?

[Kc_1411 in reply to SherrySanford65]

Tried laser hun didn’t work thank u anyway xxx

[kel55 in reply to Kc_1411]

just as a question, rather than a critasisum! Why wont he take meds?

[Kc_1411 in reply to kel55]

From what I know, he was on methotrexate 6yrs ago he did have side effect (angry mood swings)

So he stopped I’ve asked loads y don’t u take anything his reply nothing works, these medications make u worse in the long run in terms of organs. (This Just sounds like an excuse to me) feel as though in last 5 months he has really deteriorated this may be due to weather and stress as we received bad family news.

[kel55 in reply to Kc_1411]

I came to raynauds differently than most. I have microvascular disease, raynauds is a form of this. has anyone mentioned vasoconstriction or vasodilation?

[Kc_1411 in reply to kel55]

I haven’t heard of this before

[kel55 in reply to Kc_1411]

basically, nitrates dilate arteries and calciums constrict arteries. Potasiums aid nitrate pickup. So to open vessels we iether take quick or slow acting nitrates, an example of quick is GTN, slow release isomono or isodi nitrate, GTN is tri nitrate. a cheap alternative is viagra! To stop constriction we take a calcium channel blocker such as deltiazem

[kel55 in reply to kel55]

Eating bananas therefore helps to lower Blood Pressure.

Unfortunately most over the counter remadies are vasoconstrictors, it is how they work. Night Nurse is a prime example, anyone with raynauds, migraine (also a form of microvascular disease) any vascular disease,or heart disease should not take it at all?

[kel55 in reply to kel55]

I have had this arguement with the uk scleroderma and raynauds that they should be split in two because they do not belong together and only reduces boths effect at reducing each. as far as l know it is ok to take Night Nurse with Sclerodermia? Under medical instruction I do not have any overthecounter medication except paracetamol

[Kc_1411 in reply to kel55]

See this is what annoys me about the hospital because they tell u nothing about how to care for yourself you just have to find information as you go on. They see you right it all down and send you on your way. So your telling me he should have nothing but paracetamol because the over the counter medication will do this opposite of what your aiming to do???

[Kc_1411 in reply to kel55]

SOrry he does also have Raynauds, is on iloprost once a year and previously has been on sidenifil.

[kel55 in reply to Kc_1411]

basically yes! l always check with the phamasist and 100% of the time they say nothing they can do this time. Opates tend to lower blood pressure by relaxing veins but tramadol is a constrictor. weed is a artery relaxant but! when stopped it is a massive vasoconstrictor

[Kc_1411 in reply to kel55]

So confusing isn’t it you can’t win