Feeling overwhelmed after Rheumatology Appointment

[Leenie0811]

Hello everyone,

I hope you are all doing as well as you can be, I’m feeling very overwhelmed at the moment since I had my last appointment with the rheumatologist which was on Friday... so since the last time I was seen they had put my medication up to 400mg of hydroxychloroquine so it was a check to see how I was getting on but unfortunately I was still struggling with the following:

Cracking and popping in both hip joints (more right than left), numbness down the back of both legs, cold/numb hands and feet, facial rash aggravated by sunlight along with usual pains in hands, wrists, lower back and shoulders. (Other symptoms like fatigue, light/sound sensitivity and brain fog have kind of improved but still there I just mentioned what was getting worse at this appointment)

So they said that I need to come back in two weeks time for an X-ray on my hips to see what’s going on with them but then they said that I need to take medication for Raynaud’s and they’ll prescribe nifedipine - can anyone tell me what the medication does and if there’s any side effects? Also they want to change me from hydroxychloroquine to methotrexate which is kinda scary to me as a 27 year old girl - can anyone tell me what it’s like and if that has any side effects?

I’m really quite bothered about the whole pregnancy/children and methotrexate battle as I want to be able to lead a more normal life but at the same time do I have to give up my rights to having children to stay okay? I already have endometriosis and this makes it difficult to get pregnant in the first place - I just feel like my head is all over the place and nobody in my family seems to understand what’s going on... I’ve tried to talk about how scary it is but they all say the same “take the meds and you’ll be okay” but it wasn’t the case for the hydroxy - am I being silly with all this? Just feel like I’m alone and people really don’t understand it all 😓

If you read this far thank you!

Leenie x

[Spanielmadlady]

Oh my lovely you are not alone nor silly.there is bucket loads of support advice and understanding here.there is always alot to take in at these appointments and I find it takes me several days to process it all.it may be worth asking at the clinic if there is a rheumatology nurse you can chat to.i take hydroxchloroquine and mycophenolate so cant comment on the methotrexate but I have had endometriosis and have successfully had 2 children.try not to over think things and get despondent .big hug xx

[Leenie0811 in reply to Spanielmadlady]

Thank you for the reassurance I just felt like there was a lot to consider when taking this medication and started over thinking everything so thank you for letting me know that especially with the endo situation it’s really helped me put things into perspective, when I go in two weeks time I will be meeting with the nurse again rather than rheumatologist so I think I will take my questions to her and see what advice they can give. The support on here is really a life line when nobody else understands x

[Spanielmadlady in reply to Leenie0811]

My rheumatology nurse was called hayley and she was lovely.sometimes they explain things in simple terms (I'm not inferring anything by that btw) and at a slower pace.i often find the consultants letters helpful as again I can read it at my own pace when my brain allows so if you dont get letters ask for one to be sent after each appointment.these meds are the big hitters (as I call them) and come with alot to consider .think it through gently over the next 2 wks and write down what you want to know. Dont be afraid to ask anything of anyone.keep smiling sweet pea xx

[Leenie0811 in reply to Spanielmadlady]

Yeah I understand what you mean I think the nurses are so good they take that little bit of extra time to go over everything and I have access to my medical records online so I can view the letters on there if I need to it’s always a good help. Thank you again for your advice I’m feeling a little less overwhelmed about everything now and writing down all my questions to prepare for the next appointment xx

[Spanielmadlady in reply to Leenie0811]

Always here for you xx

[Melba1]

Oh you poor thing. Sometimes I think we need an appointment to get over and talk about our rheumatology appointments! There’s never enough time to properly discuss your worries.

Taking methotrexate does not mean you won’t be able to have children ever. I think it’s one where you’ll need to stop for a bit before trying for a baby so if you want one soon then you should maybe try something else. Sometimes these drugs are only for a while until they get into feeling much better and you can stop when you’re ready for a family.

Most people stay on hydroxychloroquine as well as starting something like methotrexate though so maybe worth checking why your rheumy might be stopping that? Unless you had a bad reaction most people should be on that too.

I was on methotrexate for about a year (get the injections as they’re easy to do and then you’re less likely to feel sick) and found it very good for the pain and fatigue.

I think people who haven’t got the disease will never understand in the same way, but people on here always do so you’re never alone with it.

If you’re not sure or worried though it’s best to contact your rheumy again and say you need to discuss it further and go through the pros and cons first. That is their legal responsibility before you start a new drug but so many time’s it’s just a ‘well here try this at’ and maybe a leaflet or a quick explanation!

Good luck, always a tough decision with deciding on a new medication and only you can decide, but if I could go back in time I’d take the ‘bigger’ drugs than hydroxychloroquine earlier and try and get good disease control. You could go into long term remission like some people do 🙂

Xx

[Leenie0811 in reply to Melba1]

Yeah I think so too it was so much to take in at the appointment it just all hit me at once - I know right now I’m not in the position to have children with my work commitments so I know I will take the methotrexate I just got so worried about in the future what would happen if I did get to that stage. Thank you for the reassurance about it not being able a permanent thing - my mum worried me as she said I hope you aren’t on this for life which sent my little brain into overdrive.

I’m not sure if I have to take hydroxy at the same time I’m going to ask that when I go back up to the hospital, all the information came out so quick I was just trying to write everything down when I got out the appointment and missed that part!

Thank you for the tips for taking methotrexate I think that’s probably the best decision for me right now and hopefully I can get the injections like you said so it doesn’t cause too many side effects, when I started taking hydroxy I was very nauseous so I might mention that when I go back in a couple of weeks. My mum suffers with some long term health issues and I think she thinks when I get new medications I will be on them for life as she has never come away from any of her meds they just add to them all the time when she gets a new symptom but it just makes me worry I will end up she same - she has fibromyalgia, arthritis and chronic fatigue.

I’ve been trying to do everything I can to be healthy with my lifestyle choices so I hope one day to go into remission - trying to stay positive sometimes seems impossible but the support here really does help! Xx

[svfarmer]

Hi I know it’s all a lot to take in at first, I was on hydroxychoroquine and methotrexate but after 6 months had to come off hydro as it messed about with my eyes- that’s not to say that happens to everyone but am still on Methotrexate which I’ve been in for last 4 years, I have absolutely no problems with it at all and it was helped all my symptoms- you will be closely monitored and have regular blood tests - I think if your thinking of pregnancy then you’ve got to stop it for 6 months before trying for a baby and obviously can’t take it when pregnant so it wouldn’t be the end of the world for you so try not to worry - I’m sure family mean well but they probably don’t know what to say to you .

I think you will gradually take everything in and accept - have you got a good friend that you could confide in if talking to you family is difficult and they are not understanding?

Best wishes xx

[Leenie0811 in reply to svfarmer]

Yeah I was worried when I had to start hydroxy with the eye issues as my mum said she had cataracts when she was in her 30s, I’ve been lucky not to report any issues with mine just have to wear glasses for up close things (which hasn’t changed since starting the meds)

Thank you for the information about methotrexate that’s really eased my anxiety about starting the medication and it’s good to know that you can come off it if you plan to have children, I’m not in the position to have kids at the moment I just worry a lot about the future sometimes.

Yeah I have a friend who has endometriosis so she does understand the chronic illness side of things so I have been talking to her, my mum has long term health problems but sometimes she just thinks it’s going to be like her so I try talk to my friend more these days - she helped a lot with the having children side of things it was more the new meds she doesn’t know much about lupus so rather than burdening her I thought I would come on here and ask but she’s very supportive xx

[UCTD]

Good morning Lennie, sorry that you are so overwhelmed after a consultation with your Doctor. Is there a Rheumatology nurse attached to the clinic? Not sure where you live. The Rheumatology nurse/ nurse specialists are a fantastic support.

The website Versus arthritis, SRUK, and arthritis Ireland have great online information regarding medication and management.

I took nifedipine For Raynauds, it worked for a while but in the end I go in for Iloprost infusions twice a year.

I did try a number of treatments but the infusion works best for me.

Good luck, and this forum is also a great support.

[Leenie0811 in reply to UCTD]

I’m based up in the north west and I was told when I go back in a couple of weeks I will be meeting the nurse I have appointments between the rheumatologist and the nurse usually depending on the outcome of what the rheumatologist says. Thank you for the info on those websites I will check them out - I always find the more information I can see from sites like this help a lot. Learned the hard way not to google things as it’s an absolute minefield!

Thanks for the info on Raynaud’s and treatment it’s good to know there are plenty of options - it’s something I really struggle with at the moment so having to write down everything in preparation for the next appointment, sometimes it’s tiring remembering everything but just have to keep on going and yeah you’re right this forum is really good for support I’m so grateful for the replies - my anxiety is a little less now, thank you ☺️

[UCTD in reply to Leenie0811]

You are most welcome. The nurses are great for information, and there are usually a few different treatments available. It’s really about self management too and minding yourself 😊

[puffyface]

Hi Leenie,

It’s all just a bit overwhelming isn’t it...but you are in the right place for advice and support. I’m about to start methotrexate too (have been on hydroxy only for 5yrs) and it’s really worth reading and learning as much as you can about new meds before you start. I posted on this site a couple of weeks ago and someone lovely said that some of the best advice they had been given for lupus was to eat well (AIP diet...or a form of it), do gentle yoga each day and try to exercise and take time for yourself. It’s good advice. Try not to worry about what will happen next, but ask as many questions as you can before you start. I go armed with lists to rheumy appointments...or I forget what I want to know. X

[Leenie0811 in reply to puffyface]

It’s nice to know someone else is starting the medication at the same time I hope everything goes well for you - I have only been on hydroxychloroquine since the back end of last year it helped with fatigue and brain fog with some of my other symptoms but I knew something wasn’t quite right so I noted down what’s been going on and they recommended starting this - I’ve had a look on the NHS website and that’s helped but going to check the others recommended in the post too.

What is the AIP diet this is something I’ve never heard of? I follow a plant based diet as I found I’m intolerant to cows milk and eggs but also meat really doesn’t agree with me either my symptoms were really bad before I transitioned but I’m always up for trying new things ☺️

Yeah I’ve started noting down some of the questions I have with my symptom diary they have asked me to keep - this support group really does help when it all gets too much! Xx

[puffyface in reply to Leenie0811]

AIP is autoimmune protocol diet....it’s about cutting out all things that are inflammatory and building back up. Written by people with autoimmune disease. Worth a try for the joints? X

[Leenie0811 in reply to puffyface]

Yeah I will have a look into it for sure anything that helps is a bonus! X