Hi, Just seeing if anyone anyone else noticed a significant worsening of their symptoms of PD since having the CoV19 vaccination?
I had my first jab (Pfizer) on 16 Feb and over the past couple of weeks I seem to have worsened. I seem to have an increase in low amplitude high frequency tremors of my legs in particular, and arms with increased stiffness at night and disturbed sleep due to hyper sensitivity in my feet…
On Easter Monday I went to sleep fine but woke with stiff neck with rigidity and occasional spasms that prevent a good night’s sleep…
I had also developed a bad taste in my mouth with unpleasant odour that only I could smell. Had abdominal/stomach pains as well as hot flushes and nausea immediately after eating.
Some of these symptoms seemed a bit like Covid19 but a lateral flow test was negative.
I am baffled by the step change downwards in my health over the last few days.
What has changed to have such an impact in less than 1 week?
Before last week, if I forgot to take a PD tablet at the allotted time (maybe up to 3 hours late) there was no sign that my body was in need of more medication. No neck spasms, no bad taste in mouth. No apparent indication that I was nearing the edge of effectiveness of my current medication regime.
Just wondering if anybody else has noticed anything?
I’ve had both jabs (Pfizer) and haven’t noticed any change in my PD symptoms. There was another thread about this a few weeks back though so it might be worth looking for that.
I could have written that myself. I have had Parkinson’s 11years on meds for 8 I have coped well until now. I’ve had the Oxford vaccine in February and gone seriously downhill. It leaves me worried about having the second jab.
My husband’s symptoms improved 3 weeks after the AZ jab in an extraordinary way. His pills quickly kicked in (normally they take 40 mins) and the effect of the pills lasted longer. He was able to drop one of the Pramipexole. Unfortunately the effect only last 6/7 weeks and the pills are less effective than they were before. We have another jab next week so here’s hoping …
Do you feel that, generally, your medication is not working so effectively? Or is there something more specific?
I find this very interesting…
Hi @sjthorpe and @Jeanjeanie70,
I wanted to take a moment and welcome you both to our community. I’ve very sorry to hear you’re both noticing a change in your Parkinson’s symptoms after having received the Covid-19 vaccine. You’ve come to the right place though for support, as you can see already from the outreach of our fellow members. Any time that you have questions or concerns about something, or just need to chat, please feel free to share here.
I would recommend that you both reach out to your GPs, Parkinson’s nurses, or specialists if possible to discuss how you’re feeling. They will know your needs best and may be able to make some suggestions for you on how to proceed forward. Communication around changes in symptoms is very important.
You can also contact our helpline regarding this, or anything else Parkinson’s related, whenever you need it. You can connect with them on 0808 800 0303.
We are all here for you.
Forum Moderation Team
Sorry for not replying sooner I am really struggling with meds. My sleeping is really bad waking every hour with a tremor sometimes barely controllable. Meds are 3 hourly but not getting much on time. They wear off half an hour early and next dose can take 45 mins to kick in. It my be a coincidence having the vaccine but thought I’d ask the question
Hello Jeanjeanie 70,
I feel that it is perfectly natural to speculate about your covid jab. Everyone is so different, and reacts so differently. No expertise at all!!! - but I don’t think that it is beyond the realms of possibility that when an ‘event’ interferes in some way with the fine-tuning you have achieved between you and your body and the way in which it assimilates and processes medicines, perhaps some temporary disruption might occur and things will settle down again.
That said, the vaccine is a marvellous thing (and I go for my second dose - the Oxford - this afternoon). However, I know I’m more physically wobbly than I was when I went for my first dose just 10 weeks ago, and feel a little bit nervous. Luckily, I will be accompanied right to the door.
As a further thought, I had to discontinue for the second time in 3 months a daily antacid taken to protect my stomach from strong anti-inflammatories prescribed for severe arthritis pain. These, it transpired, had a very unpleasant effect on my system (the antacid). I’ve since researched the fact that such medication actually removes all acid from the gut, thus producing a less favourable (potentially) medium for lovodopa to be absorbed. Again, just a remote possibility, but I know that I’ve lately experienced some feeling of decline that seems to be a little beyond that attributable to normal progression. We’ll see what happens now that I’ve discontinued this regime, although I’m not taking inflammatories either!
Hope that you feel better soon Jeanjeanie, and that things revert to as they were.
My husband who has been diagnosed 9 years has had a headache and fatigue and a noticeable increase in tremor about 3 weeks after having the 1st AV jab. the doctor did blood tests and all fine. We have yellow carded it too. he has been worried this might get worse with second. Doctor says to have it. headache has gone now.
It is hard to know what is happening but he had been stable on the same dose of sinemet for years so it is a worry for us.
I can definitely understand why you and you husband would be worried given what you’ve described. As @joy.mod mentioned earlier on this thread, we’d recommend that you reach out to your husband’s GP, Parkinson’s nurses, or specialists if possible to discuss how he has been feeling since his Covid vaccination.
They will know his needs best and may be able to make some suggestions for you on how to proceed forward. Again, communication around changes in symptoms is very important.
Hello Rhea and all contributors,
I seldom contribute to the forum nowadays, but do sign in to read Creative Corner, and the poems of the talented EllyMac and Jon, as well as other contributors.
I feel it is incumbent on me to pen my experiences regarding Covid19 vaccinations. I’m 83 and have had Parkinson’s for ten years. I’m now diagnosed in what is termed ‘Late Stages” of this cruel disease. My mobility is poor and I get very little relief from the symptoms. Getting the medication levels correct is problematic, difficult and unpredictable.
My cognitive skills and general mental ability are excellent, which is one blessing.
I’m making the claim (with many caveats) that the Covid19 Vaccinations (Pfizer in my case) may have increased the severity of nearly all of my PD symptoms. Particularly neck pain, due to nerve damage caused by Dystonia and Dyskinesia, both of which, I feel have stepped up yet another notch. Freezing (switch-offs) have increased slightly in severity, since my first Pfizer jab in January and my second nearly three weeks ago. My taste buds are now so useless they make every food taste of metal, again that could be coincidence.
There is one symptom I now have, which I am fairly confident has actually only commenced since the vaccinations? My heart, apart from mild akinesia, lungs and vascular condition are in very good shape and all recently tested. Bearing that in mind I have developed rapidly a symptom where when I stand from sitting or resting position and start to move forward, using my trolley, within seconds I am completely breathless and my torso and brain seems to go into a non functioning state and a stasis of that condition and I have to sit down. It is quite frightening, but rarely lasts more than a minute, although I have to sit longer than that, before I feel I can move again.
Please don’t imagine that I am blaming directly the Vaccine, it could just as well be coincidence, but I feel it is necessary to bring this to peoples attention.
Good wishes to you all
I am 43 yrs old and on parkinsons medication for 2and a half years. I was initially worried about taking the covid vaccine. But when read and understood more about the potential benefit of the vaccine , I have decided to take it. Being a health professional it’s mg responsibility as well. My colleagues who had vaccine before me many if them had side effects like tiredness , body pain fever etc etc. But later on we realised whoever had covid developed these symptoms. We all had pfizer vaccine. I had my. Two doses and I had been perfectly fine apart from had a bit of pain on my injected arm. It affects each person differently.
I would recommend everyone to take vaccine as I have seen the cruelness of the covid and I have colleagues unable to work since 1 yr. So it’s better to have the vaccine than suffer from the horrible disease. Vaccine won’t stop you getting co vid but it will less severe. Hope better days are coming…
Good afternoon everyone,
This continues to be a very interesting discussion. Best wishes to you all.
Thanks for keeping us updated on this and I’m sorry to hear that you’ve been experiencing side effects following Covid-19 vaccination. Just to echo what we’ve already suggested on this thread, please raise your concerns with your GP or Parkinson’s specialist so that they can continue to monitor your medication and make any changes where necessary.
You may be interested to know that we hosted a live Q&A with Dr Rowan Wathes, Associate Director of the Excellence Network on the Parkinson’s UK Facebook channel. We took pre-submitted questions on various issues including which vaccine is better for someone with Parkinson’s and what the possible side effects are, along with some other questions. You may find this helpful and I would encourage you to check it out here: https://www.facebook.com/watch/live/?v=432880801304608&ref=watch_permalink
As always, if you need to speak to someone about your concerns, please remember that you can always contact our helpline.
Hi there, this is my first post. My father has been suffering with Parkinson’s for approx 6 years now. He has coped well so far although lockdown stripped him of his ability to play tennis 3 times a week which has had an impact on him both physically and mentally. He still tries to do exercises as he knows that is the best way to keep mobility up.
He had his first Covid vaccination back late January with no problems. However after the second vaccine his PD symptoms seemed to have worsened and his medication doesn’t seem to work as well. He felt really unwell about 3-4 days after the vaccine and then although got slightly better he is left not feeling the same as before the 2nd vaccine.
He is on 4 sinemet pills a day. Usually he feels good in the morning after his first pill and then gradually gets worse throughout the day as the pills no longer seem to pick him up as much as the first one. However, since the vaccine he feels the first pill is only working about 50%.
Is anyone on another type of Dopamine that might work better for him? He speaks with the Parkinson’s nurses occasionally (when they call him back) but they keep saying he is on the ‘gold standard’ medication and they never seem to want to increase his dosage.
It is very frustrating to watch him deteriorate especially as he has always been a very active and fit man.
Has anyone got any suggestions?
Hi @TanyaK and welcome to our forum. You’ll find everyone here very friendly and supportive.
We’re sorry to hear that your father has been experiencing difficulties since his second vaccination. This must be very worrying for you all. There’s been quite a lot of discussion about the vaccination here and in other threads, so I’d encourage you to read through people’s experiences.
It’s important to talk to your father’s GP or Parkinson’s nurse about any new or worsening symptoms. They may want to monitor this and make any appropriate changes to his medication.
The Facebook live Q&A at https://www.facebook.com/watch/live/?v=432880801304608&ref=watch_permalink 4 may be interesting for you, since we asked Dr Rowan Wathes, Associate Director of the Excellence Network about the possible side effects for People with Parkinson’s.
Do remember you can always speak with our helpline and local advisers at 0808 800 0303 about specific concerns.
All the best,
Forum Moderation Team
Yes. Before my first vaccination my symptoms were well controlled and I noticed no problems if a dose of Sinemet was late. Since then my medication has been less effective and wears off after just three hours. I have experienced a definite downturn in my health. My neurologist says there are no reports of detrimental effects on PD patients. Are you feeling any better?
Hi.I am also sure that the Jab has affected my walking. I was dx with parky 8 years ago and until the jab I was doing OK, on 4 sinemet a day (8,12,4 and 8pm) and well controlled. I could walk a mile unaided. Almost immediately after the second jab. my walking got worse, I now shuffle and break into rapid baby steps. My other motor and non motor skills are still OK. I phoned our Parky nurse who spoke to my consultant and they decided I should increase my sinemet to 6 a day (one and a half tabs every 4 hours. I was a bit concerned as this is a big jump, sinemet is a powerful drug. Anyway I have given it a whirl! I slowly increased the dose, and I have been on the 50% stronger dose for a couple of months. I have an appointment to see my neurologist in October. If things don’t improve I will suggest I go back to 4 tabs a day, I need to keep as much sinemet in reserve as possible for the long haul!