I have some questions that maybe someone can help me with.

[Willow7733]

Hi! I have recently had some bloodwork and some new things popped up - and I was wondering if it is lupus related, or something entirely on its own.

I am currently on Coumadin (Warfarin) for several pulmonary embolisms, and now my hemoglobin is high and my erythrocytes are high.

Also, I am now very low on vitamins D. I have never had problems with low vitamins because I follow a good balanced diet.

My lungs are affected and I am at 62% lung function because of the damage by the clots in my lungs. Has anyone had lung involvement?

Thank you for any insight you can give me. I just never know what to bring up with the specialist . I see him in February.

[lupime]

Hello Willow

I can't offer any insights into lung issues and Lupus but thought it might be worth mentioning to you that following a balanced diet doesn't always stop you from having a vitamin deficiency. In auto-immune conditions sufficient absorption through the gut can be an issue and so under the tongue/sprays/drops of a vitamin may be needed, or indeed in my own case - injections for B12. Many people with Lupus have a vitamin D deficiency. I hope someone else can help you with your other queries. All the best to you.

[KnitSewPurl]

Hi Willow ,I noticed that you are from Canada. Not sure how your system works there.

Did they check your INR as you are on warfarin? Your INR has to be above certain ratios if not your blood will thicken and you will clot again.

I would suggest to request for a Bone Scan. To make sure your bones are not compromised.

Also I used to get my lung function test done before every appointment as well. Consultant discharged me when they found that I was very stable on my current antibiotics regime.

I am on treatment as my lung capacity is not great. I have Bronchiatistis mine happens to be on my upper lobe. Most Bronchiatistis tends to have theirs on the lower lobe for some reason mine is on the top lobe. This was diagnosed at the same time if my SLE.

I take vit D supplements that is on my high dose of calcium with Vit D due to Osteopenea. With the addition of my multivitamin. We calculated the dose altogether of the Vit D making sure I don't exceed the recommended amount .

Never had any actual issues problems with my bloods.

Only issues I have is inflammation markers and ANA. Plus all my lesion spots that pops up all over my body.

With Vit D there are various forms of them there is a spray form ( this is very high dose ) can be bought over the counter and usual tablets (they usually come in varied strength) they can be bought over the counter in the UK and dissolvable (usually they have to be prescribed)

I felt a major boost in energy since taking it but my body took the toll of it as it certainly did not like me working and doing so much work. Not used to me going into overdrive!!

I was so shattered yesterday I could barely move or walk when I got home had to sit down and rest before I could make myself some lunch.😅 I would say punishment for doing so much in short pace of time well when I needed to get so much done I such short space of time it got to be done.Slept in this morning felt so much better not 100 % but much better.

So yes , you can get high doses of vit D . Hopefully it is available in your country.

Take care 😘

[Willow7733 in reply to KnitSewPurl]

My INR is followed by a pharmacist at the hospital. Which is convenient since I work at the same hospital. My INR is never in the optimal range. I was supposed to be followed by the pharmacist for a month, then they said I should be ok to have it tested once every month or so…that was last March. I am still all over the place and testing every two weeks.

[KnitSewPurl in reply to Willow7733]

That is not good. When they check your INR are you adjusting your warfarin dose at the same time . Because you should be doing so. When INR rises or goes down you need to adjust the dose according with the consultant. If it is not adjust right you are more susceptible for another clot else where. - not to scare you or anything but you basically are now at risk really because of your thickened blood condition.

It can make you very unwell. I would suggest to get in touch with with his secretary your consultant at least leave a message to him via her to let him be aware that your INR is all over the place. Also if you are seeing your consultant soon worth mentioning this to him as well .

That your instability of maintaining your ratio .

They will probably need a high maintenance ratio compared to someone who is a normal person. If you under what I mean .

[Willow7733 in reply to KnitSewPurl]

They know and they adjust it. I am being well looked after. The pharmacist is there for difficult cases like mine - she works with the hematologist who gets copies of every blood test I do, they consult, and then call me - as they do with other people with other blood diseases and cancers.

I have re- clotted three times on Watafain. I have also had Xeralto and Elequis fail me a few times. So back on Warfarin now. I feel I have had at least one more pulmonary embolism in the past three months, but I never told anyone.

[Sarah3124]

I have MCTD (which I’ve been told is a mix of Lupus and RA). 11 years ago I had bilateral PE’s and a DVT in my right leg. I was hospitalized for 2 weeks and honestly, I don’t know how I survived. Doctors were confused at the cause, they had nothing. I was 30 and healthy. Years later was diagnosed with MCTD, so could have been autoimmune related. I will say, during flare ups (like allergy season) my lungs will burn. Lasts a day or 2 and comes and goes, but I’ve noticed it happens mainly during flare ups. Not sure if this helps, but it has happened to me. Hope u find some answers ❤️