I have been on Hydroxychloroquine for about a month now. I had blood tests taken by my rheumy in January, then in March, and again just before I started the new meds in early May. But when I went to ask for another prescription of Hydroxy this week I was told I needed more bloods tests??! Is that normal to have blood tests every month or so? I have never been given the results from any of these tests either, other than to say I have sticky blood. I read on here about people knowing their results, is that because you ask for them or have them sent to you??
Sorry for all the questions but it's all a bit new to me! x
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sparkle247
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Yes - perfectly normal. When they are sure you have stabilized on the drug and nothing nasty is happening to your body as a result, they will probably reduced the frequency a bit.
Sorry just saw about the blood test results: you usually have to ask for them, in my experience.
Thank you MaggieS. That is very reassuring! I was beginning to think there was something they were trying to hide! I will make sure I ask for the results at my next appointment. Thank you x
I can access my blood results online, ask your consultant can you sign up for that, you have to give your consent to be able to view it online, not sure if all hospitals operate this system, but worth asking as they don't always mention it to you .
Hi lucky you only needing to have bloods done six weekly I have mine done weekly and have terrible trouble with collapsing veins and have even ended up with blood being taken from my feet at times. I wish mine was only six weekly that would be a blessing,
This has been for about four months due to drug therapy and some side effects of other medications that I am on have caused a few problems with my liver so they keep a very close eye on what is going on in my liver just in case anything serious starts to raise it's head. I have also had a tendency to be dehydrated in the past and the specemins sometimes clot before they can get any results so I have to wait until the next week and get a call telling me to start drinking lots of water. I sometimes feel like it would be best for them to leave an I.V. line in me and I could just go and let them take some from that each week but my veins are in such a state even when I need to have one of them in I tend to "spit"them out. I keep smiling sweetly though while I grit my teeth and put up with another hole in me for the next sample.
It has become part of life and I just get on with it now. I hope things are going well for you at the moment
I was weekly for the first 6 months (I think was my white blood cell count was extremely low) and I now go once a month. I did speak to my rhuematolgist last appointment to see if u could go less often and he said no! So once a month it is
Thanks Twilo76, it is reassuring to hear that it's normal, well normalish anyway!
I hope they decide to lessen it for you soon.
My rheumy does sound rather blase about the whole thing, having read some reports about hydroxy! He didn't mention about getting my eyes tested, only to ensure I have an annual check up. And he doesn't want to see me until August now.
Yeah as normal as we can be ha ha! I don't think it will lessen for me as he checked the notes and it stated monthly. I suppose each of us are so different, and it is a very complex illness. I think because I felt ok I didn't need to get it checked and I was also abit blasé about taking my medication (just kept forgetting to take it!) but I will carry on getting them just in case any hidden problems arise. The joys of it all Hope it all settles for you sparkle. Take care
Normal??????? What's one of them? lol I'm very lucky where my docs are concerned as they are all very good and seem to speak to me not at me and take my feelings into consideration. Just as well really as I have shingles on top of everything else now so am avoiding going out as I don't want to give it to anyone else. I make sure I remember to take all my meds, have had to take so many since childhood it has become habit but if I have any changes I write them on a white board on the wall or on the calender so I don't forget. It does make a difference taking them when you are meant to I was feeling great before I got shingles for the first time in years.
Oh dear, shingles too, that doesn't sound at all pleasant on top of everything else going on. I hope things improve for you soon. Do you think it makes a difference at what time of day you take the meds? I have been taking hydroxy in the evening but am not sure if they peak at a certain time and perhaps I am missing the full benefit of them?? x
Thanks Sparkle, it certainly isn't pleasant as it seems that lupus makes shingles worse if you are having an active flare. I think that it does make a difference what time you take meds yes as the ones that make me drowsy I take most at night sleep off drowsyness and if they have a long life in the body they are fine to take at night as they are still going round the system during the day if they have a short life in the system take them in the morning so you get the effect during the day and put up with the time without them at night. I have a very good pharmacist who tells me all these things and when I worked in the medical profession had my own copy of BNF so could look these things up for myself. I often find that the best person to ask is the pharmacist as she has more time to spare than the doc.
Iv had this argument with my gp, he says its every 12 week but my rheumy says its 24 :/ I'm on hydroxy. My gp tried to refuse my hydroxy because id not had bloods done but i argued that if you stop them ill get worse then ill sue, also how can i have them done if you don't order them hmmm cant just ask for it myself! Xxx
Mmmm, yes they certainly all seem to have their own ideas about things!! Having worked in the veterinary world for 25years I have seen the many different opinions of vets over certain cases, so I am sure doctors must be the same!! x
They are obviously not all singing from the same hymn sheet then!!! As I said before I asked my rhuemy if I could reduce my monthly blood tests to as long as possible between them and he would have but he checked his intranet notes and it stated monthly! But maybe we are all individually monitored. So I go like a good little girl every four weeks!! Ha ha
Blood test results don't usually get sent to the patient on the NHS but they will go on a computer system which your GP can access.
In the case of GP and consultant having different opinions, try asking consultant to write to the GP asking them to follow their recommendations, and copy you in to the correspondence.
Sometimes the hospital has a booklet to to record the monitoring results in for you to keep then you can ask the nurse to update it for you when you go for your next test. Ask nurse for one when you go.
The alternative is to ask the GP for the results.
Different hospitals and health Trusts have different policies so one person's experience here may be different from another's, such as here in Newcastle we have a system where we can book GP appointments and request repeat prescriptions online, but nothing else.
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x
How long has that been for?
I'm very lucky where my docs are concerned as they are all very good and seem to speak to me not at me and take my feelings into consideration. Just as well really as I have shingles on top of everything else now so am avoiding going out as I don't want to give it to anyone else. I make sure I remember to take all my meds, have had to take so many since childhood it has become habit but if I have any changes I write them on a white board on the wall or on the calender so I don't forget. It does make a difference taking them when you are meant to I was feeling great before I got shingles for the first time in years. 
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