Scleroderma & Raynaud's UK (SRUK)
6,889 members3,255 posts

Any advice greatly recieved

Hi All

I am now experiencing amy 3 episode of acute blue finger over the last 8 months. My GP finally diagnosed Reynaulds but is confused as to the episodes I am experiencing with my fingers.

The first one was severe it was my middle finger that went blue then numb, I was only getting a few hours sleep a night due to the pain. The doctor just kept giving me antibiotics, it cleared after 3 month.

Within a week I felt the familiar symptoms and yes it had moved to the index finger of the same hand. I was in so much pain I went to the walk in centre at the hospital. A surgeon cut a whole in tip of finger to squeeze out what he thought was pus which then went on to become infected and my nail dropped off. Needless to say this did nothing to help my situation. This finger took four months to heal.

A month later and it is in the middle finger of my left hand, which is now a deep blue and I'm not sure if it is more painful than the other two or I just can't cope with it anymore, it is getting me down and making me quite emotional. GP has said they don't want to give me another course of antibiotics (would be 10th course) as they don't work - no s**t Sherlock 😡!!! He has now put me on naproxen and said if it is not better in a week he may send me to a surgeon. Shall we see what the odds would be that it will be gone in 7 days 🤔. I am at my wits end but don't know what to do or where to go.

Any advise would be brilliant.

18 Replies
oldestnewest

Hi, have you been prescribed Nifedine (excuse spelling) or Amlodipine, I take the latter and have recently been prescribed Sildenafil as well, they are all prescribed to help Raynauds. Do you have primary or secondary Raynauds? I suggest you go back to your GP and ask about the medication I have told you about, may I also ask do you have Scleroderma?

3 likes
Reply

Hi

I am on nefedine at my request and I have also mentioned Scleroderma. My problem I think is I see a different GP each time as it is near impossible to get the same one but I will try. Thank you

Reply

Hi have you tried the SRUK website or helpline to see what they can advice

Reply

Had this for years. The best thing to do is prevent getting cold. Any change in temp will do this for me - including cold drinks. Or a slight breeze on a very hot day. Make sure your core body is warm. I always have a coat for air conditioned places. Got a heated vest for work. Also have heated gloves for grocery shopping. After a risk of amputation I am very careful and even wear light gloves to open door for my dogs.

3 likes
Reply

I can manage my reynauds just finger infections and the pain that comes with it. Even on holiday I had my gloves with me :/

1 like
Reply

I have had Raynauds for decades (now secondary to scleroderma) and have always had one very dodgy index finger that was infected for long periods. It was particularly bad because it had a crush injury years ago which compromised the circulation even more than Raynauds. I used to keep it in hot salt water (ouch) when reading or watching TV to reduce the need for antibiotics. The pain when knocking it accidentally used to bring tears to my eyes and it often kept me awake at night and I had an on-off ulcer. I used gemolene to help keep infection at bay and that also has anaesthetic in, I never went anywhere without a tube of germolene in my bag. Sometimes it oozed or emitted white chalky stuff or crystals which I now know was calcinosis. I was not prescribed anything for my Raynauds which I had just learned to live with. Since my scleroderma diagnosis my consultant has moved me from nifedipine (which my GP initially put me on) to sildenafil, which I have now been on for well over 2 years. My finger is now better than it has been for probably 25 years and I have no calcinosis from it, the ulcer on it has healed and it is almost pain-free. I know sildenafil does not suit everyone but for me it has been life-changing, I have no side effects and I now do not dread the many every day jobs that I avoided before - silly things like cleaning the basin where a clumsy knock on a tap left me screaming with pain. It may take a while to work, but for me it has certainly done its job. I hope you find a similar 'cure'. The finger is in fact famous - its photo features in the SRUK leaflet on finger ulcers!!!!

3 likes
Reply

I have Raynauds which reacts in the same way,I was put on Nefedipine which dialates the capillaries allowing better blood supply. In cold weather you can use heated gloves or the heat packs used by fishermen/hiker which you squeeze to generate the heat. The main thing is to keep warm. Hope this helps

Reply

Please ask your GP for an urgent referral to rheumatology. You need a proper diagnosis and treatment.

3 likes
Reply

Evesdoc is right you urgently need a Rheumatologist consultation & your GP can refer you to specialist hospital for Nailfold capillary test to confirm Raynauds. In addition to Med's suggested by Fairy - also Fluoxetine (old Prozac) is very good at keeping you warm. Your GP can prescribe this . For each individual it is trial and error with Med's. Cutting a hole in your finger seems very drastic without Blood Tests, Scans etc. I take all my Med's at night. You are not alone but you have to keep going back to GP as S/he far too busy too think about you between appointments. I make another appointment before I leave surgery. Sometimes Pharmacists usually in indepdndent chemists can be very helpful. Good luck

1 like
Reply

Hi All

Thank you all for taking time to respond, I will take all your advise and hopefully get a proper diagnosis and the right medication for me

Reply

Hi LO3Davies, I am so sorry that you are going through all this physical pain and emotional anguish. You are suffering a lot and it causes stress. I have had attacks that have caused ulcers, infections, throbbing pain and loss of fingernail. I take 500 mgs of Twin Labs Niacin twice daily to lesson the attacks. You can get this at the Vitamin Shoppe. I also wear warm gloves when I go out in the cold and am in air conditioning. I put a handwarmers inside my left hand glove and soak my hand in hot water when it throbs. Sleep with an electric heat wrap on the sore hand. Pray about the good you can do for others. God will show you what He wants you to see. Seek God's help. God bless you.

1 like
Reply

Had something very similar on my right hand fingers...index and middle travelling to my ring finger.....both hands were affected but the right was the worse one and becoming increasingly worrying....it was going from blue to almost black and the tip of my middle finger was splitting like a cut ....so showed my doctor and he immediately sent me to hospital to see what was going on. I was put onto a drip to open the blood vessels and allow the circulation to improve...can't remember what it was called as too worried about my fingers dropping off with gangrene to ask....I know they said but ...anyway, if it would not have worked then I would have had to receive an operation to allow the circulation to continue to my fingers....the doctor did explain it all to me but I wasn't really taking it in.

I was in hospital for 3 days on this drip and , thankfully, it seems to have done the trick and I was allowed home but put onto clopidogrel to thin the blood. I have systemic sclerosis, with the side effect of secondary Raynauds...diagnosed about 2 years ago now so the problems with my fingers stemmed from this.

I would encourage you to suggest to your doctor that you may need to have this investigated and maybe tested for an auto immune illness or Raynauds....I was not put onto anti bios by my doctor but all are not the same .....my doctor had no clue as to what was going on with all my ailments...until I got pneumonia and had to be admitted but my symptoms were a bit odd so a consultant came in to see me and she was the one who diagnosed S. sclerosis...and the treatment was begun. But, it is up to you to question what is going on and how to go forward and find out how to be treated.

I do hope all goes well for you and best of luck pet. x

1 like
Reply

My GP was clueless...I went to a Rheumatologist and she put me on Nifedipine, 81mg aspirin, cellcept and a Nitroglycerin cream and have gotten great results. Mine was so bad I had "Digiatl Ulcers" on 6 of my fingers. Once they healed and I continued the medication...no more ulcers.

Reply

Hi Jmrose I am also prescribed the meds you are taking for my scleroderma and Raynauds. Did you have any side effects from the cellcept?

Reply

In the beginning nausea....but it passed.

Reply

I recommend you ask your GP for Sildenafil, as it has a proven track record in improving peripheral circulation, and (in my experience) it is well tolerated by the system. (I cannot comment on Nifedipine.) That being said, and as various replies have underlined, you need a good diagnosis, so a referral to rheumatology by your GP would be an urgent first step for you.

1 like
Reply

OMG, that sounds gruesome (and all too familiar!) and unfortunately also like you are not in the right hands at all! The last thing you need now is people doctoring around without having the proper knowledge of what they are doing! Inflicting woulds to your fingertips is the worst thing they could possibly do and antibiotics are just not going to do anything!

Go and see a decent rheumatologist to get a proper diagnosis, and to rule out any underlaying causes such as a autoimmune disease to your severe Raynauds. they will likely prescribe you vascodialators to open up your blood vessels!

Sildenafil is the way to go for me, although your body might get on better with other medications.

Where are you based if I may ask?

Best of luck! hdx

1 like
Reply

Thank you for your advise. I'm based Birmingham UK. I was visiting Ireland and ended up in hospital for 2 days where they gave me pain killers and antibiotics on IV which helped. Waiting to go home now and I'm gonna push for proper treatment

1 like
Reply

You may also like...