Still waiting for confirmed diagnosis

I'm going nuts. Saw rheumatologist and had bloods on 21st December. Rheumatologist only just sent letter with results and recommendations to gp on Tuesday. Gp still doesn't have it. In the meantime I'm losing my hair, it's so thin now when it once was lovely and thick! I've been told whatever it is, it's definitely auto immune.

I know I will be on at least plaquenil to start (if bloods don't show anything). Does anyone know if this helps with hair loss or if there is anything I can ask the gp for? I'm not willing to lose my hair!

Seriously frustrated...

5 Replies

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  • Hi DenverKUK ,

    I can appreciate your frustration about having to wait to get a diagnosis and start on treatment. Have you asked your GP if they can call you when they receive the letter from your consultant?

    Hydroxychloroquine (plaquenil) does help to reduce hair loss in some people as it gets the lupus more under control.

    We wrote an article about hair loss in lupus which has lots of information and tips. You may find it helpful. You can read it at lupusuk.org.uk/coping-with-...

  • Thank you. I've asked the GP to chase the letter and explained I know they are super busy however I feel like my issues are worsening and am desperate to get started on medication as the rheumatologist indicated I should be sorted last week. Very helpful to know about plaquenil and the hair loss. It's literally coming out 30-40 strands at a time when I wash my hair, blow-dry or just run my fibers through it! I will read your article, thank you!

  • Hiya

    I know it can be very frustrating to wait for a response and sometimes it can take a gp a while to get the letters and read them. Did the Rhuematologist not send you a copy of the letter? I have always received copies. Maybe call their secretary.

    I too go through times when hair loss is extreme, I luckily had very thick hair and was devastated when this started falling out. Planquenil (hydroxychloroquine) can reduce the hair loss but please be aware that it can take months for the the drug to start working and I don't want you thinking it's not working for you if you do not see an immediate result. In the meantime try and get some medicated shampoo to see if that helps.

    All the best

    L xx

  • Thank you. I did phone the rheumatologist secretary and she said she'd have to ask if I could have a copy! Not happy. My GP is very good and helpful so I'm sure she will give me a copy. I'm just very impatient by nature but I'm getting more and more problems all the time so I'm desperate to start treatment. I'm now getting weird style itchy patches of skin in my hands and foot, and having spells of vertigo for the last week (has happened before several times but never any reason to think anything untoward until now). The pain in my feet and hands and wrists is becoming unbearable. I work full time and as a single parent I have a lot on in the best of times! I'm trying to stay positive...

  • You sound very much like me with symptoms. I hope you get sorted soon.

    I find it strange she had to ask if you can have a copy. You are entitled and guys lupus clinic and my local Rhuematologist automatically send me copies of all letters and I never had to ask them.

    Try and stay calm, easier said than done I know.

    L x

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