Hi everyone I saw my haematologist and discussed my painful joints and asked if I could be prescribed hydroxychloroquine anyway he said that I should see a rheumatologist and was referred to one. Several visits to my Haematologist later and chasing up the referral I am finally seeing a rheumatologist on Monday after 2 years of pain and waiting. I am hoping that I will get somewhere, I have only just restarted my Botox for my migraines because they stopped them due toCovid and they were not seeing patients. I have made a list of symptoms/problems any other suggestions I want to get the most out of the appointment.
Steve RN
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Who is managing your Botox injections? A neurologist?
If Botox fails to help you, can you ask for a referral to a neurologist? nurtec / ubrevly and Aimovig if available have been game changers on the migraine front for me.
This is what I would ask address if applicable.
Ask for copies of blood work
Get current levels of vitamin D, b-12, ferritin, iron, full thyroid panel,
Compliment levels 3 and 4, - Sjögren’s antibodies, lupus and APS antibodies, scleroderma, RA, etc. Those would be normal for a rheumatologist to run.
Hi KellyMany thanks for your response unfortunately my current neurologist is not happy to prescribe me with CGRP’s due to my history of small vessel disease in my brain and cardiac history. I also have a pacemaker which means I cannot use electrical devices/tens devices. I am sure he would be even less happy now that I am also on aspirin as well as warfarin due to a new cerebral clot. I know Prof Hughes recommends Aimovig so I am going to have this discussion at my next neurology consultation which should be a face to face one I am hoping he might change his mind meanwhile I am going to speak to my old colleague who was my previous neurologist to see what his thoughts are.
Important that Hematologist and also Rheumatologist are Specialists of autoimmun illnesses and work with such patients every day so they are knowledgable and give you a correct diagnose and the best treatment.
I read you have a diagnose of APS and take Warfarin (now also?)
Hi Lure Yes I agree I have been taking warfarin for nearly three years now and have to inject with heparin if my INR drops to 2.5 but I have been managing to keep my INR between 3-4 for sometime now but despite that still developed a cerebral clot. This meant having to go onto aspirin as well. It shows that even though you think that you have things under control clots can and do still occur.
I can tell you that I take Warfarin and selftest and must keep my INR at 4.0 to avoid symptoms. You also have to test often especially if you have tested positive to Lupus Anticoagulant (LA). I wonder what INR you usually have and hope you test often enough to see when the INR drops. That is very individual how difficult it is for us with APS and LA to keep our INR in range as that is so exstremely important with out sticky blood.
Yes, triptans are not indicated for us for these reasons- this is why, as I understand it, (?), that CGRP’s are the better alternative.
This is how it was approved for me, on this basis- as well as “vomiting with migraines “ caused me to loose my warfarin and thus was very dangerous as I lost my anticoagulant- greatly increasing clotting risk.
HiI am sorry that I have not replied sooner but I was waiting for the rheumatologist to get back to me as sometimes what they write is different to what they say. Anyway I had ultrasound of wrists and elbow all normal, spinal x-rays also normal, he did tell me that I have Raynauds although because I said that I get occasional muscle twitching/spasms he said that he would like to discuss with the neurologist who I see regarding my migraines in case there was any likelihood of seizures. Otherwise he would consider a 6 month trial of hydroxychloroquine. He did tell me that I am triple positive which no one has mentioned before, but the letter also mentioned that I had a history of myocardial infarction, I know that you can get silent MI’s but this on is so silent that even I did not know about it I think I will follow up on this when I next see him. I did raise the question of seizures with hydroxychloroquine in a recent Q&A with Dr Arvind Kaul and he reassured me that there would be no problem taking hydroxychloroquine and that he did not see a risk of increased seizures.
HiThe rheumatologist discussed my symptoms of my poor circulation with having to wear two pairs of gloves in cold weather, discolouration of hands and fingers along with painful tingling and numbness on rewarming. Also my feet go blue when standing in the shower and following my stroke I suffer with permanent numbness from the knee down in my left leg which some times is from my hip down it’s like having a dead leg which can last almost all day. At the moment I am suffering from really severe fatigue I have broached the subject of self testing with the clinic nurse who is going to ask if this is possible, I did say to her it’s really frustrating when you consider that I used to teach patients and nurses how to carry out the testing and when I go to the dentist they ask me to do the test with their machine.
Steven appreciate the detailed answer. I have been diagnosed with APS years ago. Due to clots in the legs and PE. Was put on warfarin. Couple of years ago started having joint pains and tingling in hands and feet after warming up after cold exposure. Ever since started with 400 MG of planquenil. Helped the fatigue and the I think also noticed some improvement in joint pain.
Hi ApsinthehouseQuick update on latest Rheumatologist discussion I spoke to another rheumatologist last week and at that point they were still discussing starting me on hydroxychloroquine. Then I had good news this week received a telephone call from the clinic nurse informing me that I was to start 400mg of hydroxychloroquine daily starting from today and will be reviewed in 3 months. So my perseverance has paid off I am glad to say.
SteveRN, thanks for the update and I’m very happy to hear the good news. I am pretty sure your will feel an improvement over the course of the next few months. Pls keep us posted on the goods news that are coming. 🤞🏻
So you are triple positive you also. Then it is important to be correctly anticoagulated and to have a steady INR to avoid clots etc. That is difficult.
Do you also have high titres on Kardiolipin- and beta-2-Glycoprotein1- antibodies?
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