Anyone who developed Raynaud's?

[hlh]

Hello all,

My 70 year old father was diagnosed with a primary immunodeficiency about 10 years ago when he was found to have a low CD4 count for no clear reason. His current diagnoses are Lymphopenia and Specific Antibody Deficiency.

Fortunately, he has had only one respiratory infection in the past year, and stable CD4 counts in the 300's-400's, and he responded well to his last Prevnar shot.... He has not had any treatment with IVIg so far. He has MANY many more serious/urgent medical issues, so we are grateful his immune system issues seem stable. While his lung CT scans look great (no brochiectasis), he does have progressive COPD on Pulmonary Function Tests that they ** think ** is related to chronic reflux/aspiration and not to recurrent infections.

I am curious how many of you were diagnosed with your primary immunodeficiency, and ?years later developed a rheumatologic disorder or a cancer (ex. lymphoma, multiple myeloma), as these can often creep up later in folks with immune system problems per my reading.

I ask because my father has started developing intermittent white/blue/blackish fingers, that are cold, painful and often numb/tingly. Then they get better within minutes. Only a few fingers get it, often different ones each time, both hands. We will see his primary care doc next week about this, but I realized that this is probably Raynaud's.

Raynaud's in a 70 year old man is usually a sign of another underlying problem that is creeping up.... like lupus, scleroderma, lymphoma, or multiple myeloma.

Have any of you gotten Raynaud's? Another problem? Could you tell me about what happened, and what sort of doctor's helped you in your situation?

My father already has more the 20 doctors (!), but unfortunately no rheumatologist. Ugh....

[john]

Hiya,
Although I am not as old as your Dad, I can empathise with this problem!
I have Good's Syndrome, which is immunodeficiency after thymoma/thymectomy, and this has been successfully treated for 20 years or so with IVIG every three weeks.
I too get loss/slowing of blood flow in my fingers and toes, especially when the weather is cold (like NOW!), but it doesn't unduly worry me because as you say it quickly goes and anyway there are far worse things for me to worry about!!
I find that wearing thicker socks and also not forgetting thermal gloves helps comfort-wise.
I happen to take beta-blockers for another problem, related to my immunodeficiency but not commonly so, and I feel that the reduction in my BP, and the clamping of my pulse rate caused by the beta blockers has made my own peripheral circulation problem worse.
If I were you I would definitely tell the relevant doctors about this, but speaking for myself I am wary in rushing into yet another diagnosis/medication scenario for ME!
Welcome to our forum, by the way, and please let me know what the outcome is.
And tell your Dad to hang on in there, and get better soon!

[hlh]

Hi John,

Thanks so much for your nice response! It was really helpful and appreciated.

We saw my father's primary care doctor today. I actually had mixed feelings about bringing up the Raynaud's symptoms but knew I had put it off long enough.... we will also see his Immunologist in a couple months.

His doc was familiar with Raynaud's and agreed his symptoms sounded like that, and he talked about keeping warm etc.. if those are triggers. It doesn't seem like my father has the classic triggers though, and since he is partially paralyzed (sigh...) he cannot feel his toes.

Anyway, my father is on a beta blocker as well, and as you figured out - beta blockers can make Raynaud's worse. My Dad has a few other issues that also can be exacerbated by beta blockers (the respiratory problems, fatigue, depression) so we decided that maybe this is a good time to stop the beta blocker and switch to a calcium channel blocker (Diltiazem) instead. Diltiazem can help my Dad's high blood pressure and fast heart rate (like the beta blocker) but will also help the Raynaud's and should have fewer side effects. Calcium channel blockers can also help Raynaud's in many people, although my Dad's symptoms are so mild (most of the time) it is not an issue.

My Dad's doc did agree that while the symptoms are mild and not too concerning, it is more important to think about... ?why are you developing this now (since Raynaud's is not common in 70 year old men). He agreed a couple simple blood tests were a reasonable thing to look for signs of inflammatory/rheum disorders (ESR/CRP, ANA) but we both agreed that this is a little bit of a "slippery slope". It will be reassuring if they are normal/negative, but if they are abnormal..... ugh..

So wish us luck that the tests turn out normal.

Do your fingers turn color (white or purple/blue) and become numb/tingly? It can be pretty startling. The first time it happened I thought my father had ?spider bites or something... but then they disappeared. So wierd.

Thanks again for your post.

[john]

Hiya again,
Yes, my fingers do go white and blue patches, and numb but not tingly. Rinsing them in warm water brings them round quickly and then it usually doesn't come back straightaway, but holds off for a day or two.
Really big coincidence with your Dad here is that my toes are numb most of the time and my legs below the knees sometimes too. The doc I see for my liver problems (see what I mean about too many diagnoses??) thinks that the problem is NOT glucose intolerance, which was previously assumed and for which I take metformin, but could be a vitamin D/Folate problem, and I just got tested for that, but don't have the results yet!
I DO wish him luck with his tests and I REALLY want to know the outcome!!!!
I get the impression you are not in the UK... am I right?

[hlh]

Yes, you do have a lot of stuff going on too. Sorry to hear about that, and I hope you have some good docs helping you. A good doc is hard to find...

My father's toe numbness is different then yours, as he was hit by a car and suffered a spinal cord injury and many root/nerve injuries. he has no sensation in his feet at all and many other problems. It is really rough.

It sounds like your situation is even more complicated then just Raynaud's. If you have numbness all the time in your toes/legs that means you probably have a neuropathy (nerve problem). One of the most common causes is diabetes, so that is good you are on metformin. Have they also checked the blood tests B12 (and also the metabolites methylmalonic acid and homocysteine... I'm sure I spelled them wrong), SPEP and ANA for you? Have you had nerve conduction studies done? Unfortunately, I know a lot about these tests. If you haven't seen a neurologist already, that would be helpful for you. Ideally, it should be a neurologist who is an expert in neuropathies.

I knew someone with liver disease (hepatitis) who also had rheumatologic problems who had a very painful neuropathy. Your liver expert doc may know about this sort of problem, but since it is rare, they may not.

No - we aren't in the UK. We are in the US. Although health insurance in this country can be crushing financially, we often have an easier time seeing specialists then you guys can. No system is perfect....

[john]

Hi, I have to say that I have access to an excellent medical team and feel very cherished and well looked after!
I'm sorry to hear about your Dads accident, as you say that's really rough.
I did have nerve conduction tests, glucose tolerance tests and it was the liver team at the Royal London Hospital in London that picked this up and prescribed the metformin. They now stress that I am not diabetic and this is why they want these further tests done.
Don't get me wrong, but sometimes I just feel that I could spend all my time being treated and tested and life's too valuable and too short for that, so I put up with some stuff and treat the stuff that lets me do the stuff I like doing!!!!
My best wishes to you and your Dad,

[hlh]

Thanks again for your kind thoughts.

How great you have such a good medical team. It does sound like they are very pro-active if they put you on metformin. I think that is sometimes done now for people with neuropathy of unclear cause and they think your sugars might be slightly moving in that direction. As long as you have a neurologist overlooking your case too that is good.

I like your attitude about your medical issues. It is similar to my father's. Well, actually I think my father would prefer never seeing a doctor, and I often have to bargain with him to get him to go.... I guess my nature is a little more "pro-active"... find it early, and treat it before it becomes a problem. Part of this is influenced by my experience with my mother, who had mild symptoms for years that she minimized and her doctors didn't pursue..... and by the time we actually found out what was going on, it was pancreatic cancer spread everywhere and it was too late.

Sorry... didn't mean to be a downer.

Well, I am a little surprised that other folks are not posting with their experiences about developing rheumatologic etc.. problems later in life, but maybe that's a good thing, and means it doesn't happen so often.

[john]

Hiya,
Yes, I am extremely lucky to have such a great medical team, in fact to try to thank them I volunteer to work at the Immunity clinic one day a week (today actually!), as the patient rep/befriender, when I meet patients who appreciate a visitor who knows what they're going through, or can tell them what to expect after a diagnosis of immunodeficiency.
So I can say that although there are certain side issues with treated immunodeficiecies, such as joint pain, fatigue and chronic gastric upset, nobody has yet told me that they have neuropathies, so I'm assuming that mine is an age-connected problem!!!
I was sad to read about your Mum's cancers, there is always the risk of ignoring a symptom, and I suppose we should all learn from that.
Do stay in touch, it's good to chat to you!

[hlh]

How wonderful you volunteer at your clinic. You are a role model for us all. I'm sure the experience brings you some satisfaction, helps others, and makes your doctors pleased and grateful. Great!

Nice to chat with you too. Thanks for your contributions to this board.

[john]

Thanks for that - it's not a big deal really!!
I'm poorly myself just now, sorry to be late replying.
Keep in contact