@Joanna

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Joanna

Lemtrada Course 2 & overactive thyroid

I had my first Lemtrada infusion in December 2014 and found that in the months after my walking improved, the pins and needles in my hands and feet were significantly reduced, my fatigue levels decreased and I could once again enjoy a hot shower. An MRI carried out in August 2015 found evidence of a single new lesion probably associated with relapse activity in the months prior to my first course of Lemtrada, with an absence of additional activity suggesting that I had been relapse free during the preceding eight months. Despite these obvious benefits, during September 2015 I experienced a sudden deterioration in my symptoms which included very high anxiety levels, problems with my walking, leg trembling, rapid heart beat and night sweats. My thyroid had been tested at the beginning of September and was fine, however when I undertook tests in November 2015 (I was due to have my second course of infusions in December 2015) it was found that I had developed an overactive thyroid (Graves Disease). As a consequence, the second course of Lemtrada was delayed, I was referred to an endocrinologist and I began a course of ‘Block and Replace’ therapy for my overactive thyroid. The medication prescribed for the overactive thyroid considerably improved the symptoms that I had developed and with my condition stable I was admitted for my second course of Lemtrada. This was conducted during February 2016 and comprised three days of infusion, with the hospital experience being shorter yet largely the same. Since being discharged from hospital I have essentially been fine, however I have found that the hives, headaches and jaw aches were more volatile than after the first infusion. That said, these feelings seem to have gone now (1 week on) and instead it’s just tiredness, chills and a dry cough. When I had my first course of Lemtrada there was relatively little information on the internet, however now there is loads. Unsurprisingly, I’ve found that most of the accounts are regarding the first course of Lemtrada, with a general lack of information of what to expect of the second course. In addition, I haven’t come across many accounts about thyroid problems related to Lemtrada so I thought it might be useful if I put my experience on here. Above all, I’d like to say that despite how intense and complicated taking this medication can be, I am so pleased to be prescribed it as the benefits for me do seem to far outweigh the negatives. If you have any questions about my Lemtrada experiences then please let me know, I’d be more than happy to share things with you.

Gilbo

@Gilbo

Thanks so much for posting. People sharing their experiences is proving invaluable. Good luck with everything x

Monica2015

@Monica2015

Hi @joanna, thank you for sharing your experience. May I ask whether the Graves' disease had been overlooked in the blood and urine samples you provided monthly? Additionally, is the medication taken for life, and have all the MS symptoms now totally receded now? Was this due to the steroids or the thyroid med in your opinion? Thank you, Monica

potter

@potter

I am glad to see someone post about DMT and thyroid problems. When I was taking Rebif my thryoid was low the doctors said my numbers weren't that bad. I had the classic symptoms so I new things were quite right. When I started on Tec my hair started breaking and thinning, so I asked for a Thyroid check, this time too high. I went through a couple of different types of sonograms and they decide I could have cancer. It was in a area that was difficult to reach so I ended up in the hospital. Thankfully no cancer, during this whole process my numbers were high and low. The doctors told me I have a bouncy thyroid no treatment for it. I was sorry I asked for the test, I went through a painful procedure and it cost me $1.500 for the part the insurance didn't pay. Potter

Joanna

@Joanna

Hi Monica - The monthly blood and urine tests carried out after Lemtrada are specifically geared to assessing for ITP and kidney disease, with thyroid tests only undertaken every three months. My thyroid tests had been carried out in December 2014, March 2015, June 2015 and September 2015, each of which found that my thyroid was working fine. As such, I was unlucky that it malfunctioned later in September 2015, but lucky that it was identified during early testing (undertaken prior to Course 2) in November 2015. As you may know, thyroid problems quite commonly occur in association with Lemtrada and perhaps I should have been more attuned to what was happening. Instead, I managed to attribute the symptoms to everything else, specifically I convinced myself that the walking problems were a sign of a new relapse and the anxiety increase was because I had the second course of treatment coming up. Neither were true and it was a relief to find out that it was my thyroid that was the problem! In terms of medication, I was put on a course of Carbimozol and beta blockers during November/December 2015, which together blocked my thyroid and reduced my very rapid heartbeat. I then began a course of Carbimazol and Levothyroxine in January 2016, with the new drug taken to reintroduce the thyroid hormone back into my body. As far as I am aware it is intended that I will be on a combination of these two drugs for a six month period, hopefully with no need to medicate after this time. In terms of what I mistakenly thought were ‘MS symptoms’ during September/October/November 2015, I can quite confidently attribute these to the imbalance of my thyroid rather than anything else. The trembling, rapid heartbeat and night sweats reduced throughout December 2015 and as a consequence my walking improved. I’m still having some anxiety issues, however I’m involved in a CBT course and this is certainly improving things. Hope this helps.

TracyD

@TracyD

@Joanna Thanks for the info on round 2, mine is now a couple of months away and I'm looking forward to it. On the monthly testing for thyroid, I have TSH tested every month, not every 3 months, my MS nurse simply requested they do it at that frequency. Perhaps it's worth asking them to just include it with the battery of other tests each month ?

Joanna

@Joanna

Thanks for the info, I'll mention to my MS nurse about monthly tests for the thyroid as it certainly makes much more sense. Good luck with the second course, it really wasn't too bad and seemed to pass very quickly.

agnieszka-legierska

@agnieszka-legierska

Hi Joanna can we talk on the phone about this? I'm due to start lemtrada in April? Pls call me on xxxxxxxxxx :) NOTE: Please exchange personal details by Personal Message as this is an open public forum. - Stumbler

Monica2015

@Monica2015

Hi, just a quick piece of advice, pls refrain from posting your personal details, send a PM instead. Moreover, Joanna's post is re a complication that you may or may not have. I have received lemtrada, as have many others who can advise on general questions you may have. Try not to worry about all possible complications as they may never arise. Monica

Stumbler

@Stumbler

You're quite right, @monica2015 about personal details - amended appropriately. :wink:

Monica2015

@Monica2015

It is advisable to take heed of Joanna's words, but still focus on the positive benefits that you may receive as you are going to commence treatment. This is my opinion. Good luck!

Joanna

@Joanna

Hi, I just want to clarify that despite the thyroid problem I am still really, really pleased to have made the decision to take Lemtrada. It's just gone a week since I was discharged from the second course and I am feeling pretty normal... which is great! Apologies if I've worried anyone regarding the thyroid. It was horrid when I didn't know what was happening, however since its diagnosis it's been very dealable. Almost a non-event really. I hope everyone's future treatments go well, x

Monica2015

@Monica2015

Hi @joanna, that was the message I intended to write, re you mentioning that you were more than happy with the treatment, notwithstanding the thyroid issue. I was simply concerned in the first instance about her tel no being on display! Which country are you in, as in London, I too provide monthly bloods. I myself give urine samples, although not requested. I'm so glad that all has been resolved, or at least managed, and you are on the road to recovery. Thank you for saving re the warning signs to be aware of. How is the MS itself faring post treatment? Monica

Monica2015

@Monica2015

Sharing not saving!

Monica2015

@Monica2015

@stumbler to the rescue! How are you incidentally?

Joanna

@Joanna

Hi Monica, I'm in London too and I also provide monthly blood and urine tests. It's just the thyroid blood tests which are only being asked for every three months... I checked the literature last night and it's what Genzyme recommend. To be honest I had really high levels of thyroid antibodies pre-treatment so there was always a good chance I would develop a thyroid problem... Although it happening so soon was a bit of a surprise! As for the MS, it seems to be pretty inactive since the first infusion, with no identifiable relapses to talk of. Some old symptoms have seemed to slightly flare up with the second course, but nothing too bad. It's all good really. How about you? Is your next course soon?

Monica2015

@Monica2015

Hi Joanna, Your tale has provided the impetus to double check each of my test results also, as I'm uncertain this element has been tested. I've recently received month 4 post treatment, so about 4.5 months and a long way from the second course. That is excellent news! Were you relapsing aggressively prior to treatment, and what was your physical state ? When were you dx? Have you witnessed improvement? I have been dx 11 years ago, and was experiencing relapses back to back last year (71 in total), so praying that it arrests those to hopefully enable healing to take effect. It is always so heartening to hear positive outcomes, whatever the source. Monica

Monica2015

@Monica2015

Incidentally, unaware whereabouts you are, however, @clairbear88 and I are meeting socially, hopefully tomorrow, so if you ever would like to join us, feel free. Monica

Robaczek1

@Robaczek1

Sorry @agnieszka but i can't send you message i don't know why? ?

Monica2015

@Monica2015

Hi @robaczek1, has your Lem commenced? When you are feeling up to it, perhaps you could join us too? X

Robaczek1

@Robaczek1

Yes @monica in may ☺

Monica2015

@Monica2015

Meaning you have commenced treatment, or not until May? Or, a typo meaning you may join us? Just to clarify...

Robaczek1

@Robaczek1

@monica yes im about to start in may after all my check is supposed to be in April but im travelling so i decided to start in may...☺yes i want to join ☺☺

Joanna

@Joanna

Hi Monica, meeting up sounds great, however I'll leave it for a little bit as I'm just finished with the lemtrada dose. Keep me in the loop though, it'd be lovely to meet you all

Monica2015

@Monica2015

Of course @joanna, will keep you updated. Hope your recovery is speedy! @robaczek1, I thought you were starting imminently? Well, if you are free tomorrow at 2pm, pls advise. Otherwise, I shall inform of the next meeting when arranged. M?

Joanna

@Joanna

@sandwich - Oh dear... That all sounds very complicated. Hope the nurse gets back to you soon about how best to sort it. @monica2015 - have fun tomorrow and hopefully see you in the future

Monica2015

@Monica2015

@sandwich, have you gained or lost weight during this time? Do they test your TSH every single month? I only seem to be tested sporadically for mine, and had not fully appreciated the significance thereof. Will insist they do so going forward. @joanna, thank you. Hope things run smoothly!

Robaczek1

@Robaczek1

@monica sorry for late replying im currently working full time a d i don't have time to meet but hopefully after my lemtrada i will have some time off☺☺☺kissessss and hugss to.you☺☺☺???

Monica2015

@Monica2015

Hi @joanna, sorry I'm unable to accept your friend request, due to an error message and when I tapped into it, the request disappeared completely! @robaczek1, no worries, stay well and speak soon!?? @sandwich, that's good news they are now monitoring monthly. I feel I'm losing weight (I cannot afford to lose!) so will call requesting they check each month. So, it was simply the TSH that they were required to monitor to establish if any issues?

Joanna

@Joanna

Hi @monica, thanks for letting me know about the FR. With regards OA thyroid weight loss, I lost about 1/2 stone and at the same time developed a huge appetite. I had a look at my paperwork and the tests associated with the thyroid have been for TSH, with 'free thyroxine' levels also provided. When my thyroid became over active the blood test also recorded levels of 'free tri-lodothyronine'. I can't say that this all means that much to me but it may be of use if you are mentioning your concerns to the nurse. Good luck with it all.

Monica2015

@Monica2015

Thanks @joanna, will keep note of your info, to ensure I'm aware of all as a precautionary. Do attempt to PM again and I'll respond if can open it.

Monica2015

@Monica2015

@joanna, no luck once again, as soon as attempt to access, the message is automatically deleted before have opportunity to accept! Advised @gpeps, so hopefully will be resolved...

Joanna

@Joanna

@monica2015 I'll try again next week... Maybe it'll be third time lucky!

Monica2015

@Monica2015

Ok, good luck!! Will advise if hear in the interim...

TeresaBSchaefer

@TeresaBSchaefer

Both hyperthyroidism (overactive thyroid) and hypothyroidism (underactive thyroid) are typically started by an autoimmune reaction. While Graves’ disease commonly causes hyperthyroidism, Hashimoto’s commonly causes hypothyroidism. Both disease processes are started by the body attacking the thyroid gland. It’s not entirely clear why men have less autoimmune disease than women. Researchers suspect it has to do with the differences in the immune system. Women have been found to have a more intense immune response to vaccinations, trauma, and infections, compared to men. So it is likely that this highly active immune system puts women at risk for more thyroid disease. Thanks and Regards Teresa B. Schaefer <span style="color: #ff0000;">*** Website link removed as inappropriate - Admin ***</span>